Saturday, December 15, 2007

Last Post

Phil can't be with us to post this last entry. As you know he has been courageously fighting for his life, but the battle ended early Thursday morning. He was a bad ass until the very end and we know that he was thinking to himself "fuck you cancer." He also was likely thinking, "what the hell? why does this shit always happen to me?"

During his first cancer he called himself "cancer boy"--apparently the first sign that he was a full fledged member of the cancer boy club was his lack of eyebrows, making it very hard to tell whether he was joking or serious (but Phil was hardly ever serious). When Phil's cancer came back, we didn't have any clever nicknames--we were mostly just pissed off. Cancer, in case you didn't know, is a bitch. Hopefully someday it's a bitch that we can beat so people never have to go through the same shit Phil did.

Visiting the Lombardi Cancer Center was always a little bit nerve-wracking for Phil--sometimes there was good news (high neutrophil count) and sometimes the news sucked (no chemo allowed because the prior chemo had made him too sick). But Phil always handled these appointments with laughter--he liked to play with medical instruments in the exam room, often belting out some lounge singer tunes. And the nurses always knew when he was around because they could hear us laughing (mine was always the more nervous laugh, but Phil's was genuine amusement). We always said that we just came to the hospital for the cable TV and the fine cuisine.

Phil will be missed by those who hiked, drank, joked, fought, smoked, caroused, helped, laughed, cried, and loved. He is the love of my life and I will be forever grateful that I had the chance to know him and love him.

Mrs. Bearmagnet (Dani)

Wednesday, November 21, 2007

Cycle 5, Day 1

Monday, 11/12

I'm alone today. It's Dani's first day at her new job. My onco comes in, I tell her about some "low grade" fevers (under 101) I had over the weekend, she examines me, SOSO. But not quite. She hears something in my respiration. Gives me another 'script for Augmentin (2x/day). That should take care of the lungs and any low grade fevers.

She esplains my clot is 1cm x 2cm now. Wow. It was 1cm x 3cm. Down a whole cm. Glad I went through all that for.........? I'm thinking Doctor 50:50 didn't give me enough tPA. Fuckhead

Anyway, she also gives me a 'script for Coumadin (Warfarin) - anti-coagulant and prophylactic for embolism/thrombosis. I start that after I'm done with the antibiotic and then I can wean off the 2x/day Lovenox injections. Injections that need to be at least 12hrs apart. Frikken pain in the ass.

Note - if I haven't esplained. I have a 30 days of lovenox injections into the side abdominal wall 2x/day. So I "rotate" left and right. Don't do it perfect and you get bruising. I'm bruised. Neupogen can be injected into the thighs, stomach, lower back, back of upper arms. I can only hit thighs and stomach. Don't want to ask Dani to inject me if I can avoid it. It's neither easy or pleasant to inject someone you care about.

So on chemo Days 3-6, and 10-15, I get to deliver 3 injections into my body. Right now I'm alternating thighs only for the Neupogen. If the sites don't hold up then Dani will need to stick me. Ugh.

Off to chemo I go. Its pretty uneventful and kind of lonely without The Dan. I feel sorry for people that do it alone on a regular basis. Dani does show up just as I'm finishing up. How sweet is that?

CT Scan and Another Scare: Par For The Fucking Course

Friday 11/9

Simple chest CT. How exciting is that? It's like a vacation! I go in and find out I don't even need to get nekkid and change into a gown! Sweet! I jump up on the table and the dude misses my vein, of course. He gets someone slse to do it. I think that makes 9 sticks this week. Oh well. They take two scans and I'm down. tech comes in:

Tech: all done.
Me: Great
Tech: You seeing your doctor today?
Me: nope. Will see her on Monday
Tech: OK. Hold on a minute.
Me: OK.

Goddamit! Not again! Why can't I just get a fucking scan that says Okee Dokee? And the techs did their best to keep me unaware, but they were stuck when they thought I was going straight home. He comes back

Tech: we're gonna need you to wait her until a doctor takes a look at the scan just to make sure
Me: OK. I'm gonna go get my wife from the waiting room. I'll be right back.

Fuck, Fuck, Fuck. Now I need to pull Dani out of the waiting room without causing her to panic right away.

Me: All done
Dani: That was quick
Me: I know. Lets go out this way
Her: OK.

As soon as I get her down the hallway, towards CT, I tell her the story. Her reaction is the same as mine. "Fuck, Fuck, Fuck. Why can't it just be a simple scan? Why can't we ever relax?"

Why indeed.

And so we wait. And wait. We try and relax. Soon a tech comes out and gives the all clear. They wanted to make sure the clot was smaller, not a new one, whatever. Thanks.

Fucking assholes.

Another Appt. When will it end?

Wednesday, 11/7

My Onco wants to see me the day after. She wants blood drawn to make sure I have enough coagulation factors. Or, I think the test is to make sure I don't have too much anti-coagulant (tPA) in me. The IR doc wanted me to schedule a CT for next week but my Onco overrides that and says I should go Friday so they can have results before chemo. At least it will just be a chest CT. No Barium drink or enema, just an IV. So, recap:

Mon - full body CT
Tue - tPA Infusion
Wed - bloods, doc visit
Fri - Chest CT scan

Fucking A, eh?

I go down to CT and they are booked for Friday but can fit me in 3 weeks. I really don't know why we need to do this dance? I call the Research Nurse and she gets me in for Friday, 8AM.

Sunday, November 18, 2007

Cluster Fuck

Tuesday, 11/6

We wake at the crack-o-dawn and head over to Georgetown, getting there around 0830 AM. They don't seem to have a room for me so they send us to the Bone Marrow Transplant Unit, 2 Bles. We "sign in" and go to the waiting room. G'town is packed and only certain units can do heart telemetry. I need a room b/c the drug to break up my clot (tPA) is quite potent and they'll need to monitor me overnight and make sure I don't have any internal bleeding issues. They often use it for stroke victims. So we wait. And wait. After an hour or so a Hematology/Oncology Fellow shows up and apologizes. They can't get secure a room. He sends us to ER.

Isn't that nice? Going to ER for a major, not-yet-medical-emergency procedure. Nothing more comfortable and disease free than an ER. Well, except perhaps a Gulag. Thank You. This is the first place on my list for where I want a procedure done. Off to ER we go......................

.............and ER seems confused. No one told them we were coming. They're also worried that since its not an emergency and I will be needing a room, then my insurance might pay for one or the other but not both. They send us to where I got my port, Intervention Radiology (IR). We "sign in" and hang out in the waiting room. It will be an IR Doc who will perform the procedure. Seems logical, no?

No. At least not "hospital logic"

Two Nurses come out and explain that they can't do it there and try and send us back to ER. We refuse. On Insurance grounds and Nasty grounds. It's nearing Noon. I'm near the point of telling them "obviously my condition isn't important to you. I think I'll go home and wait for your call when you have a room for me." I mean, for anyone who knows me, I'm on the edge of being so "done". We were told to get to the hospital early in the morning so they could secure a bed. With telemetry. A fancy machine that monitors hearts. Seems like a hospital might have an extra hanging around for these unscheduled events. Even though, God knows, unscheduled events, like additional patients, never do the "pop in" at hospitals. Yes?

They go back inside. They come out and put me in a room. A consultation room. My IR doc and one of his underling docs comes in and apologizes. He's very nice, actually. States the hospital is no longer big enough for the demand. I appreciate his honesty. A nurse comes in and tries to call the person in charge of securing beds. A few ER people pop in saying they're ready to do the procedure. My Oncologist and her fellow show up. basicall, my Onco is their to say "What The Fuck?" and "Don't mess with me or my patients". She's super protective of her patients and I love that. And currently acting Director of Lombardi Cancer Center. She's a force to be reckoned with.

Can you picture this? There's not enough room for all these professionals in the room, half are in the hallway.

So, in the end, IR agrees to do my procedure in there patient prep area. It's much like the in-patient infusion unit. A bed and a curtain to go around it. And, oh yeah, apparently a fucking telemetry machine!!! Where'd that come from????? I knew there must be one lying around the Hospital somewhere. IR is an interesting sub-field(?). If anyone's interested:


Now, I must get prepped before infusion. They roll me into an OR. and onto the table. Above me is an x-ray machine. The doc will pump a fluorescent through the mediport and see how the clot interferes with it. As they expose my chest an excitement builds. Most have never seen a dual port before. And never a port set up one on top of the other. Usually it's side by side. I soon have 6 people surrounding me and touching my chest. Thanks freaks. I ask for extra alcohol as they swab me down. An Infusion Nurse will access my ports since they are experienced. First she hits the top one, then the bottom port. She can't get blood back but maybe its b/c of the clot. She leaves stating a 99% confidence that the ports are accessed. A technician turns on the x-ray and it is clear the infusion nurse accessed the top port twice. Nice going. They have to go find another "expert". She removes the "lower" needle and hits the bottom port. Three sticks. I also have two sticks from them trying to access a vein for a drip. You'd think I'd stop feeling it. You'd be wrong. And know they can get blood back.

I can see the x-ray perfectly. And it's pretty cool. I see the needles in my two ports. I see the ports. The catheter runs up to my neck then makes a U turn and ends at the entrance of the Superior Vena Cava, right above the heart. I can't see my heart and I think I'm thankful for that. The doc starts flushing the fluorescent compound through. And sees........not much. he keeps flushing. I see it go through the vena cava. He can't seem to find the clot. He expresses this. stating nothing is interfering with the flow. "Oh Goody" I think. Maybe it detached and is in my Lung where it "shouldn't" cause Pulmonary embolism. Or he's an idiot. My confidence level is low. I give 50:50 odds on either.

Why not pull up the CT scan from yesterday?

He leaves the room and consults my Doctor. I think he paged him. My doctor, BTW, took me as a patient on his day off. Guess that was the only option. Guess this is a serious condition. Anyway, Doctor 50:50 comes back and says they won't need to give as much tPA as they had anticipated and it should take about two hours, instead of four, to infuse. I'm only confident now b/c my Doc showed up for the consultation. Back to the waiting area I go for infusion.

Infusion starts at 2:30. Woo Hoo. The Nurse who starts it won't be finishing it so she labels both lines, starts the two pumps, and leaves. Soon after another Nurse comes over. Apparently I need close monitoring. I make her aware of the fact that the Heart Telemetry Machine is not on. Yes, the machine they needed to make sure I could have this procedure, the machine needed in case the compound really does a number on me. She turns it on. And long, dull story short, I'm done. It's about 5-5:30. They're gonna release me. They say its b/c I didn't need a lot of tPA. I think it's b/c they don't have a bed for me. The Nurse stresses the importance of me not falling or bumping anything too hard for the next 24hrs. And to call 911 if anything doesn't feel right.

I don't think I could sleep without my 1mg Lorazepam. I wish Dani would take some.

Monday, November 05, 2007

Who Love's Irony?

Monday, 11/5 (1030AM - 2PM)
I go get my scan, then my weekly blood draw and decide to meet my wife for coffee. We get a call from the nurse as I'm driving her back to her office. I have to pull over.

I have a blood clot. At the end of the mediport catheter attached to a major artery in my chest. It should be noted that my platelet's skyrocket after's a recovery thang.

I even once joked with an Infusion Nurse about having a heart attack during chemo.

She sent us right to our pharmacy to pick up Lovenox (Enoxaparin). Twice daily abdominal injections for one month (that's on top of my 14-20 Neupogen Injections/month - luckily they can be in other areas).

Of course any shortness of breath and I call 911.

And the port must come out ASAP. The port that was put in a month(?) ago because the chemo was wreaking havoc on my veins.

I've come to despise scans.

Breaking News.........
Hi. This is Anchorman Phil. Coming to you live in an attempt to keep you updated on this fast breaking story:


Just got a Call from my Onco and then the Interventional Radiology (The Port People) Doc. I go in tomorrow for an injection of a strong thrombolytic drug. They want to try and break up the clot (3cm x 1cm) instead of taking out the port. I also have to wake up at 4am to take my fuckinging lovenox. I'll probably be admitted for overnight observation.

Tomorrow is Dani's last day at work. There was gonna be a huge party at work and afterwards. Dani has a week off between jobs. We were gonna relax all week, drink, take in a few movies

I really am awesome at timing shit. Sorry, my beloved.

Losing The War On Cancer.

This draft was written before the next post (Who Loves Irony). I have made no Changes.

Sunday, November 4th.

2 years ago today, I was diagnosed with Hodgkin's IV. Tomorrow I have another full body CT to see how well I'm doing. Here's a great article on "The War". Dani got her book, "The Secret History of the War on Cancer", at a talk she gave recently. The author included a very sweet little personal note to me. Dani rocks. Enjoy. I've got to get back to the bottle. Cheers.

In related news - This weekend was the 2year anniversary of my diagnosis. I have a CT scan today. My 2yr radiation exposure total is:

1 MUGA (Multiple Gated Acquisition Scan) = 8mSv
4 PET scans = 28 mSv
10 full body CT scans = 120 mSv
Total = 156mSv

That's the radiation equivalent of 7800 chest x-rays. This, of course, is on top of the cancer causing agents administered intravenously to me to fight my cancer. Lung, Non-Hodgkin's, & Leukemia are some of my future worries.

And I'm assuming the scan will show what the scan 2 months ago showed. Yippee. Article

Off Target in the War on Cancer

By Devra Davis
Sunday, November 4, 2007; B01

We've been fighting the war on cancer for almost four decades now, since President Richard M. Nixon officially launched it in 1971. It's time to admit that our efforts have often targeted the wrong enemies and used the wrong weapons.

Throughout the industrial world, the war on cancer remains focused on commercially fueled efforts to develop drugs and technologies that can find and treat the disease -- to the tune of more than $100 billion a year in the United States alone. Meanwhile, the struggle basically ignores most of the things known to cause cancer, such as tobacco, radiation, sunlight, benzene, asbestos, solvents, and some drugs and hormones. Even now, modern cancer-causing agents such as gasoline exhaust, pesticides and other air pollutants are simply deemed the inevitable price of progress.


Washington Post

Joy Division Fans?

Go see Control. It's a limited release and it's amazing. They nailed it and the actors play their instruments and the actor playing ian curtis sings the songs himself. Its unbelievable as to how much he looks, dances, sounds like ian. And even though the ending is as surprising as the ending of the Titanic, it's still crushing.

Two Thumbs Way Up!

Catching Up - Lots of Fun!

Sorry. So I go see my Onco on Monday, the 22nd of October. She feels my symptoms have subsided enough to stamp them "resolved". It's kind of late but my doc doesn't want my chemo delayed at all so we head up to treatment. I thank her excitedly and the onco fellow is "shocked" that I'm excited to get chemo. She's a dumbass. Why wouldn't I be excited? The sooner I get chemo the sooner I'm done. Duh. Aren't fellows the brightest of their class??????

So now I have chemo on Mondays. I complete cycle 4 the next Monday, the 29th. The Port isn't so bad. I think the first time it hurt b/c it was so soon after surgery.

Tuesday, October 16, 2007

Grading Toxicity

Grade 1
Referring to a mild adverse event (sign, abnormal lab finding, symptom, or disease) or toxicity resulting from a medical therapy. The event is commonly asymptomatic or causes minimal symptoms and typically requires no medical intervention. The exact criteria for grading toxicity and required interventions are dependent on the organ system involved.
Grade 2
Referring to a moderate adverse event (sign, abnormal lab finding, symptom, or disease) or toxicity resulting from a medical therapy. The event may or may not be symptomatic and may or may not require some type of non-urgent medical intervention. The exact criteria for grading toxicity and required interventions are dependent on the organ system involved.
Grade 3
Referring to a severe adverse event (sign, abnormal lab finding, symptom, or disease) or toxicity resulting from a medical therapy. The event may interfere with functioning and often requires medical intervention. The exact criteria for grading toxicity and required interventions are dependent on the organ system involved.
Grade 4
Referring to a life-threatening or disabling adverse event (sign, abnormal lab finding, symptom, or disease) or toxicity resulting from a medical therapy. The event requires some type of immediate medical intervention. The exact criteria for grading toxicity and required interventions are dependent on the organ system involved.
I don't feel like a Grade 3. Oh well. On another front - my hair is thinning. Mostly on my legs (calves), somewhat on my hands/knuckles, and on my face and head. I would really hate to lose my eyelashes and eyebrows again. Makes me look like a freak.

My doctor said this treatment was less toxic than my first treatment. Wonder if she's changed her mind?

Monday, October 15, 2007

So What?

What could go wrong? It was my pre-treatment Onco visit today. Twelve days since my last chemo and two days to go for the next. No new scans, neupogen keeping my cell counts up. I thought it would be routine. I had a few symptoms to describe. So What?

My hands were drying and calloused, red & hot, making a fist or lifting a grocery bag was painful. Opening jars and prescription bottles was impossible. So What?

My feet and toes blistered after a 3mi walk in the city. So What?

The rashes in my armpits were a crimson color and going deep. So What?

My mouth sores were keeping me from eating most solid foods for the last 6 days and I've lost a bit of weight. So What?

Everyone knows the chemo schedule is the most important. I really thought it wasn't a big deal.

As usual, I was wrong. And nothing is routine.

My symptoms are "Grade 3" (?) and chemo's on hold. Again. Back on more drugs.

Yippee. If I can't drink with these drugs I may have to say Fuck It.

I think all I want for xmas is to be done with this.

In the meantime, here's something old school. You might not recognize they way Al looks, but you should recognize the voice. It's a long video but he first makes his appearance in the first 1-1.5min. So What?

We Are Retard.

Wednesday, 10/3/07

Dani tried to warn me the night before. And I got a little worried but I thought she was talking crazy. I didn't see the point in her explanation. Then, sitting in the chair I asked the infusion nurse and she confirmed what Dani said. Fuck. What the Hell? I looked away and she plunged the needle into my chest. I lurched from the unexpected pain. The Nurse shouted "don't move! it makes it worst!".


So to correct my naive post from before, the upper incision is to thread the tube, the lower incision has the port. They take, according to what Dani saw, a large thumbtack like needle and stick it through my chest into the port. Instant access to my artery. It is on the surface but I wasn't expecting it. I've had countless needle sticks, from tiny to harpoon, and never lurched.

Supposedly the port is "beneficial" in the long run. IMHO, that stick hurt like a motherfucker. But I guess it's impossible(?) to miss and they're not fucking up my veins anymore. Yay.

I would've taken a photo of it but I forgot my camera. Maybe next time?

Tuesday, October 02, 2007

We Are Borg

Thursday, 9/27/07

Resistance was futile. Our veins are not doing well. We needed a port.

I told the doc I have a high tolerance for Novocaine and most locals. I take 5-7 shots at the dentist. And yet, through the whole 45min procedure of implanting a dual lumen (news to me) port in me I remained lucid. The anesthesiologist continued to inject me throughout the procedure. Noting my wincing, hand raising, curling toes.....shocked that I wasn't out or at least in a "twilight state".

In the end, I had to wait an hour before going home, SOP. The anesthesiologist showed me her injection record - about 15. And I could've fucken driven home.

That kind of sucked.

We hate local anesthesia.

It is just under the skin. The upper area is the access point. The lower is the main device. And we know you are curious about what is underneath...............

You can see the tube up top but not all the way. Lets take a picture without the flash...

It is an efficient method for receiving compounds. We have been assimilated.