Friday, September 28, 2007

Trying To Catch Up. Busy Month

What a fun and annoying month. I feel the need to recap:

Wed 9/5 - Chemo
Fri 9/7 - Dentist
Tue 9/11 - Labs
Wed 9/12 - Chemo
Thur 9/13 - Labs
Fri 9/14 - Dentist
Mon 9/17 - CT Scan
Tue 9/18 - Onco Appt/Labs
Wed 9/19 - ENT Appt
Thur 9/20 - Dentist
Monday 9/24 - Onco Appt/Labs. Barium Swallo appt.
Tue 9/25 - Dentist
Wed 9/26 - Chemo
Thur 9/27 - Port Surgery

Friday, September 21, 2007

Free to comment

Just made aware that my comment section was only open to "registered users". I have remedied that and its wide open now.

Tuesday, September 18, 2007

Total Radiation Exposure

For 11/05-9/17:

1mSv = 100mrem

PET = 7mSv
CT = 10-12mSv (whole Body scan)
MUGA = 8mSv

Background radiation exposure in the US is ~3mSv/year.

A chest X-ray = 0.02mSv

1 CT = 500 x-rays
1 PET = 350 x-rays
1 MUGA = 400 x-rays

My Exposure Totals:
1 MUGA = 8mSv
4 PET scans = 28 mSv
9 CT scans = 90-108 mSv
Total = 126-144 mSv

6300-7200 x-rays
42-48 years of background radiation

And counting.....

Lighting up Like a Christmas Tree/No Progression

Monday, 9/17
The day of my post 2 cycle CT scan. This will tell us if the chemo's working. The "thing" in my throat is worse. I have difficulty swallowing and the urge to vomit the "thing" up after every swallow. Once at the hospital, I chug the first half of my Barium Shake. I excuse myself and walk with fist in front of mouth, concentrating, to the bathroom. I'm trying not to vomit. Never happened before. It's the "thing". In the bathroom I run the water and do that pre-vomit cough. Thankfully though, I don't vomit. back with Dani, I take a sipping approach to the rest of my "shake". It goes down slightly better. In the room I get the always fun Barium enema and a barium IV. For the first time ever, a CT tech misses my vein. Twice. She's done me many times before. Are my veins going to shit? She gets another tech in. Two is the "ethical" limit. New guy gets me first try. They do the scans, then my abdomen a second time. That should have set off an alarm but I missed it somehow.

Once home we get a call from the research RN. "Informing" me that I have Diverticulitis. Somedays a situation calls for the mental cliche statement of "No Shit, Sherlock." doubly so since it's diverticulitis. I had been experiencing a flare up. It happens on occasion. But it must've made my abdomen glow like a christmas tree for the CT scan. Techs were thinking Cancer and saw my abdomen just exploding with activity. Must've freaked them out enough to call my doc ASAP. LOL! :D

Tuesday, 9/18
In to see my doc and discuss the scan. I'm given a copy and we go over it together. To a laymen there is conflicting data on my report. Then I focus on the summary:


Just then my doctor summarizes it in human terms:


Dani and I do the "what? Huh? what do we....what does this mean? Huh?

It means we continue treatment. CT sees no disease but PET might. But this is good news. Really good news. We both were thinking the worst. It was hard not to. The worst part about it was the thought of leaving Dani alone, a widow. I would do anything to not have that happen. She doesn't deserve that. And now I might have another reprieve. Another real lease on Life.

And after i drop Dani off, I smiled. I don't remember the last time I smiled out of the blue. Probably not since before June. But I couldn't stop. And to be truly honest, I couldn't stop the tears. Not that I want to.


Home Invasion!

Scene: Our Second floor apartment, back bedroom. 8PMish, just after sunset. Dani & Phil decide to take a nap. Both a little inebriated. We turn off all the lights. She is on the bed, stage Left. I'm to the right. Both of us are on our backs. Iggy is on the open windowsill. Shade up, There's a nice breeze. The door security gate is open.

We weren't asleep for long when all of a sudden Iggy jumps off the windowsill onto Dani, waking us both up before he hits the floor hard. We both think "how odd." I look at Dani thinking "I should close the gate."

Dani turns to me and whispers "There's someone out there." I get a vibe that sends a chill down my spine and adrenalin starts pumping through me.

In a single bound I'm over her and land in front of the door. And there, crouched down on all fours is a figure, looking like he was trying to jimmy the lock. I realize instantly that a hard kick to the door and he's in. I lunge at the door and start screaming obscenities while dialing 911 on my phone. The dude takes off down the stairs and over the 7ft fence where another was waiting.

Cops arrive within a few minutes but I assume they got away.

Needless to say, we're a little freaked out.

Fever Central

Sunday, 9/9
All Morning my temp hovers around 100. I still feel a little like ass. My head throbs with any change in elevation. A temperature is, again, indicative of a potential serious infection for cancer patients. Especially if one is potentially Neutropenic. Doesn't mean I'm not hesitant to go to the ER. Whys this shit always happen on the weekend? I wait until Dani gets home from Market to break the news. I take my temp two more times and call the oncall onco. My last hope of what I'm sure will be a trip to the ER. To my surprise, the oncall thinks since its low level then it's no bigee - 1000mg Tylenol every 4-6hrs. Whoo Hoo!

Monday, 9/10
My Onco is pissed the oncall didn't rush me into the ER. Ooops. :D She wants me in for blood work.


Healthy as the proverbial horse. Well, my immune system anyway. Well, all of the cell lines of my immune system except for the one motherfucker that's trying to kill me right now. I seem to have developed a thing in the back of my throat. Somethings there that won't go away. I'm at the clinic but can't get anyone to look at it. How infuriating is that? My doc isn't around and her nurse is a case manager? All those fucking Medical Students walking around are suddenly to busy???????? I leave more than a little pissed off.

Wednesday, 9/12
Chemo Day. Yay! We have to share a room again. I'm there all day, why can't I get a private room? I see 2-3 people drudge through with 15-60 minute procedures. Kind of pisses me off. But we have always had control of the TV. That's what counts. Today the Research Nurse Pops in. I complain about "the thing". She says she'll call an ENT and make an appt for this week.

Phil The Asshole - The chemo, especially 2nd treatment, really does a number on me. Wednesday & Thursday are the worst. I get an overall feeling of ickiness, coupled with irritation, moodiness, no appetite, and nausea. And poor Dani has to deal with me. I'm a monster. Thank God she loves me. I have a hard time putting up with me.

Thursday, 9/13
Go in for bloods. I have a dentist appt. on Friday and my Onco wants to be sure my counts are OK.


Isn't that interesting? A Twofold decrease (or halving) in my WBC and an almost 2.5 times decrease in my ANC. One day after chemo. Interesting in that chemo sucks ass in targeting specific cells, perhaps? The counts get progressively worst, bottoming out 7-10 days after chemo. Hence the Neupogen. But I'm good to go for dental work.

Friday, 9/14
My dentist doesn't appear to be in. She's always so careful............and cute. Damn. I get the head douchbag. He doesn't like how long I take to go under so he pumps some stuff they use for surgery right into the canal. Hurts like a motherfucker. Fucking asshole. My Dentist pumps me full of novocaine until I numb out. Quite painless after 3-4 sticks. Then douchbag decides he can't see much so he takes the rest of the crown off. He was hoping to finish but the infection is still too big. So I wait another week, putting new cotton on my open canal 3-4 times/day.

Thursday, September 13, 2007

Was It The Drugs?

Friday, 9/7
Call the dentist at 8AM. I tell 'em whats going on and they tell me to come in ASAP. Didn't sleep more than 2-3 hrs. I call my Nurse and leave a message. The pain is excruciating. I get in ~9 and she takes me immediately - shoots me with 3 shots of Novocaine. What a beautiful drug. The take an x-ray. Frikken infection looks the same. She cleans it and leaves it open. It needs to drain and heal before they can cap it. She gives me a script for Percocet and Augmentin. After treatment the nurse calls. While I'm still in the chair.

Me: Hello
Nurse: I talked with the doc, she told you no treatment until after chemo.

Oy Vey. I had to spell it out that this wasn't elective, but a fucking emergency. What part of no sleep and me slicing my own tooth out did they not understand. Finally, with the graphic explanation, they got it. Any more work and I would have to have blood drawn to make sure my counts were good. Fine. if it's not another emergency. Chemo seems to do a number on my teeth.

I get home after picking up my scripts and waiting too long for the bus. In hindsight, I must have been delirious from all the Percocet, alcohol, then Novocaine. It's about 1230. I do my Augmentin, anti-viral, Inject neupogen, and then pop a Percocet just in case. I'm feeling really High strung and anxious. I have a whiskey. I have no food in my stomach.

The following description doesn't do my trip justice but I really don't know how to better describe it. Bad Trip, might be best:

All of a sudden, I'm feeling like I've never felt before. I lay down and sleep. It's a restless sleep. I'm aware that I'm moaning, a lot. I feel like ass in these fleeting moments of semi-consciousness. Dani comes home at some point. I get up to pee. And go back to bed. It's a horrible, indescribable experience. At some point she wakes me and tries to get me to eat some homemade chicken noodle soup. I struggle with a few bites and then tell her to take it away before I vomit. I plop back down and continue my not-sleep sleep. I spike a few fevers, sweat, moan, mumble, toss and turn. I sense delirium. At one point I feel something blocking my head whenever I try to sit up. Feels like a warm steel block against my head. But there's nothing there. It's part of the headache from hell I've got. And Time has no meaning. Sometime at night I reluctantly take my anti-microbials. And some tylenol.

And thats what I do. From about 2:30PM until 9AM the next day. And the next day I feel like never before. A headache worst than any I've ever encountered. Worn out like I fought all those hours. I veg on the sofa. I spike a few 101 fevers. I try not to panic. I should go to the ER with temps like that but the drop quickly. And I'm hoping it's all the drugs and dental work that is causing it. Not sure we're being rational about it but we really don't want to go to the ER. I decide if it continues on Sunday I'll call in and see. I just wish the headache would go away.

For some reason I hate liquids now. Have an aversion to them all. Doesn't that suck?

Friday, September 07, 2007


My root canal tooth is acting up again. Why? I call my Onco Nurse at 3PM. I need clearance to get my dental work completed. My doctors out of town until Friday. I pop some Tylenol. At 7PM I pop 2 Percocets and start drinking. I think maybe the pain is from using it - it's become increasingly difficult to not. But what if its infected?

The percocet don't help much. Dani makes me an ice pack. We go to bed at 1030. I'm up at 1130. I pop 2 more percocet and drink some more. Back to bed at 1230. Up at 330. Pop my last percocet. I'll be done with my whiskey soon. It's 415. And yet I can't stop the pain. I fight the tears. I'm ready to slice into my gum again. I'd kill for relief.

Fuck my Onco. I'm calling my dentist first thing in the morning.

I don't fucking deserve this. Who does?

Thursday, September 06, 2007

Heaven & Hell

Monday, 9/3/07. 3 Days delay

I notice all my tongue sores, chemo & herpes, seem to be all better. Do I dare? I pop a cherry tomato in my mouth. Nuthin! No burning and I can use my tongue fully I squeal with delight. I still can't use my left side due to my temp root canal but I ask Dani to add a Brandywine to my plate. Sausage, steak fries, sliced brandywine with salt. I gleefully take a bite and do a little jig in my chair. Tomatoe. Salt. Gifts of the Gods. I'm so happy. I do my little jig each time I bite into my tomato. I'm almost me again. But not quite. Tomorrow's labs will determine that.

Tuesday, 9/4/07. 4th day

I go into Lombardi around 2PM. I was stalling. Afraid of the outcome. For some reason the phlebotomist can no longer hit my veins. Takes him two sticks near my knuckles. Again, like I'm some frikken Junkie. I go home and wait. I call at 4. One to the Research RN then One to my Docs RN.

WBC 4.9
ANC 3100

Back to normal. Can you believe that? ANC almost quadrupled in 4 days after struggling so long. I "get" chemo on Wednesday.

back home and I'm ecstatic. I have a drink or two. Happier than I can remember. Dani comes home and is quite shocked at my disposition. For dinner I have a porter house, corn on the cob, and another brandywine. So beautiful to be able to eat again. I do my little jig for every bite of corn and tomato I take. Dani's a little saddened by this. She got an almost completely happy Phil yesterday and a 100% happy Phil today.

Tomorrow, I will go away. Breaks Her heart. Makes me sad. So I say lets drink. Toast today. Tomorrow is not here. And drink we do.

Wednesday, 9/5/07. 5 days late

In for chemo at 0930. Out at 4PM. It goes off mostly without a hitch. And unpleasant Phil is back. Irritated Phil is back. Irritated while driving. Irritated at Whole Foods. Nauseated Phil is back. No appetite and I struggle to keep my food going the right way. Fucking meds don't do much but keep me from vomiting. yay. Irritated, sick, fatigued. Oh well. Such is life, eh?

Give Dani a hug. She needs it more than I.


What The Fuck Do They Know?

Saturday we go back to pick up my Magic Mouthwash and were unsuccessful. The pharmacist didn't understand one of the ingredients so they called my Doc. My Doc never returned the call so they didn't make my mouthwash. Thanks. Dani gave 'em hell and we go on our way. I call the hospital to page the on-call Onco. 3hrs pass and nothing. Guess everyone's too busy on labor day weekend, eh? I call again, explaining I've been waiting 3hrs and get a quick response.

The on-call calls CVS then me back. Seems my Doc wanted Nystatin in my mix but didn't say how much. The on-call thought it wasn't necessay so told them to nix the Nystatin. It's an antifungal. Who the fuck is he? Some fucking resident that doesn't know shit about me. I tell him I'm on an antibiotic and an anti-viral for mouth issues. So either

A. Maybe my doc saw something in my mouth?
2. Maybe my doc is worried about fungal infection since everything else is being wiped out?

resident dumbfuck: :No. I don't think you need it.
Me: Thanks (asshole). click.

I call the research RN and ask her to please get this clarified with Asatiani. She pages her and emails her. I never here back.

Fuck it. Seems like there are too many cooks in the Kitchen, no?

I pick up my mouthwash on Sunday. Have I told you it's not covered by insurance? $35 bucks. Works for the two weeks I need it. Couldn't eat without it. There's a new circle in hell for insurance company employees.

Monday, September 03, 2007

Priceless II

1 Half-smoke*: $5.50
2 Harp Draft Beers: $13.00
4 Primo National seats at RFK Stadium. Donated to the Leukemia & Lymphoma Society: Priceless.

The St. Louis hat is for Mother-in-Law. :D

Wednesday I received an email from the Leukemia & Lymphoma Society (LLS) about some donated tickets to the Friday Nats game against the Giants - first come, first serve. I shot an email back immediately and scored. They were shipped overnight. Four tickets, section 222, row 8, seats 5-8. Right behind 3rd base. $50 dollar tickets. Each. I'm not big into baseball but what is more American than a baseball game in the Capital? It's a cliche like none other.

I hadn't seen a game since Little League. Cleveland Stadium. Bored out of my mind. Likewise, Dani hadn't seen a game since childhood and felt the same way. But I really wanted to see a game. I wanted to see one in RFK before they move to the new stadium next year. I was worried it was a chemo day but I really wanted to go. After my chemo cancellation, My onco said enjoy. Wash your hands a lot and don't eat uncooked from from any source but home. So Why not? Our friend Erin is big on baseball so we invited him along with a date. I was shocked at our view even though I looked up the seats before we got there:

Of course, once we found our seats I had to go get food. Gotta have a dog at a baseball game and I wasn't gonna wait for a vendor. Not for my first. And since it was DC, I opted for a half-smoke*. I was in Cliche heaven when I got back to my seat. Erin and his date had shown up by then and there we sat. He brought some crap to share and we had beer. And, surprisingly, we really enjoyed ourselves. Being that close, we felt connected to the game. It was an awesome time.

Of course, the beer helps. And from that point on we ordered from vendors. But it wasn't boring at all. And what would a Nats game be without the Presidential Race? I fergit who won:

followed by the Presidential-Dance-on-the-Dugout, of course (???)

And a lot of the fun was hoping for foul balls from lefties. They hit all around us, one very close, but no luck

And one action shot from the pitcher:

We were bummed Berry Bonds didn't play that night. We were all hoping to boo him like everyone else. How fun would that be? Oh well. The Nats lost 3-2. It was a tight game and people were leaving before the final inning. If I had seats like that, I would never leave until it was over. And we didn't. And we waited until the stadium cleared out. Why Fight? As we walked to metro we noticed a huge line. And cops holding everyone back from the metro escalators. Crowd control into metro. I thought we were fucked. But Erin, being RFK savvy, suggested we walk to the North Entrance of the same Metro stop. Sure enough, no lines. Beautiful.

All in all a beautiful night. Dani and I had an awesome time. And we were able to forget all our troubles. And that was truly priceless. Thank you, LLS.


Saturday, September 01, 2007

What The Fuck Do I Know?

Friday. Chemo Day. Yay! Dani & I arrive at 7 West at 0815 for blood draw. It's a beautiful stick. Near perfect. The Nurse draws 3 tubes, tapes the port to my arm, and we head over to Lombardi to see my Doc.

BP 138/98. Fuck-an-A.

I tell my Doc about my tongue/mouth woes and she takes a look. "Herpes" she says. Fuck. Fuck. Fuck. And a big Fuckin' hindsight "DOH"! Two of my tongue sores seemed to be getting worse the last few days. They couldn't be due to chemo. DOH! DOH! DOH! She writes me a script for Famvir (Famciclovir: anti-viral specific for herpesviridae family) and more "magic mouthwash". We go back to the waiting room. Labs aren't in yet. And no, it 'taint HSV-2, smart asses. Had an outbreak of HSV-1 once, back in Highschool. Fucker was just waiting.

We sit and wait. I'm not sure which way it's gonna go. I'm tired of fighting. I'm tired of hoping. I wanna just go with the flow. The Nurse comes out:

WBC - 2.5
ANC - 900.

Chemo delayed until Wednesday. Doc says to enjoy the weekend. Probably nothing more detrimental to chemo therapy than delaying treatment once its started. But they can't risk treatment. WTF? I go back to have my port removed and we leave. Dani's quite upset. I don't know if I care anymore.

Fuck it.