Saturday, December 15, 2007
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
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?
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.
Tech: You seeing your doctor today?
Me: nope. Will see her on Monday
Tech: OK. Hold on a minute.
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
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?"
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.
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
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
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 chemo.....it'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.
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.
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.
Two Thumbs Way Up!
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
- 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.
My doctor said this treatment was less toxic than my first treatment. Wonder if she's changed her mind?
Monday, October 15, 2007
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?
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
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.
Friday, September 28, 2007
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
Tuesday, September 18, 2007
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
42-48 years of background radiation
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
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:
NO EVIDENCE OF DISEASE PROGRESSION.
Just then my doctor summarizes it in human terms:
NO EVIDENCE OF DISEASE
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.
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.
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!
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.
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.
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.
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
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.
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
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.
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.
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
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
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.
Thursday, August 30, 2007
As you may recall Thursday, my counts were 1.4 and 460. That's 1400WBC/microliter and an Absolute Neutrophil Count (ANC or "Absolute") of 460. I need an ANC of 1200 before I can get chemo.
A normal healthy human has 5,000-10,000 WBC. 50-70% are Neutrophils.
I went in for labs on Monday. My counts were 1.8 and 700. Cell growth isn't linear so I was hoping for the best. In the meantime, the RN had to get my info so she could do battle with Insurance and get me Neupogen. I was on it last time. It's a recombinant colony growth stimulator. I inject it subcutaneously and it helps my WBCs rejuvenate. Its big bucks.
Monday night the Nurse calls, says I got the Neupogen but it will be delivered by Icorps health (cheaper?) to my door. They canceled my Tuesday appt with my Doc and rescheduled my chemo from Thursday to Friday, hoping my counts will be fine by then. In the meantime, my doc also convinced the PI that I should have chemo on Fridays only. Day 22 instead of 21. This way I get to see my doc the day of chemo. Makes me and I think my doc much more comfortable.
And My mouth sores suck ass and are getting worst. But it is the night before chemo. So I raise my glass of usige beatha and toast.
Saturday, August 25, 2007
1 cycle down, 5 to go
2 infusions down, 10 to go
2 weeks down, ?
Friday, August 24, 2007
I wake up in horrible pain. A toothache. It had been bothering me before so I made an appointment for Monday. It was a crowned/root canaled tooth. Or "dead". I thought maybe the gum was being bothered by the chemo. The pain on Thursday had me believing in Hell again. I called my dentist and they squeezed me in at 230PM. By the time I left I was screaming bloody murder and punching our bathroom/tiled wall. I was ready to cut into my Gum and relieve the pressure/pain.
An excruciating X-ray revealed a massive infection under the "dead" tooth and in one of the canals. The root canal was done the winter of '99-00. Nice job, fuck heads. The X-ray was excruciating because of all the crap they put in your mouth and bite on feels really horrible when you have mouth sores.
We go with a "retry". Redo the root canal instead of pulling/implant or doing a bridge. at 1300 it's also the cheapest method. they calculate insurance will pay about 550. Yay. Glad we're made of money and have no other expenses.
The doc gives me a few shots of novocaine and asks if I want Nitrous. I decline. they aren't trained anesthesiologists. That's why sometimes, on a rare occasion, someone dies at the dentist. And as I've "dabbled" in anesthesia......lets say I know how precarious the patients position is. So I decline but I'm nervous. I can still feel the tooth. My doc loads me up. I think I got 8-12 shots total and then they go to work. For a change, its pain free. The procedure might have been an hour. The relief I feel is indescribable I went from a "10" to a "0" on the pain scale. I almost hugged her. She gives me a script for amoxicillan and I'm out the door. The infection was so large that she left it open so it could drain. Yummy. I did smell it once the drill reached the little buggers. Yummy x 1000.
Wonder why the infection exploded then? Dani also wondered. This happened last time I went through chemo.....
I get the script and it calls for 4 pills right away then 1 every 6 hours. So at 6PM I chug 2000mg of Amoxicillan. Or does 2grams sound larger?
~8PM I'm feeling a toothache. She didn't give me any pain killers. I pop an Oxycodone (Percocet) left over from Surgery.
~15min later I feel a rush of warmth and start sweating.
I grab a thermometer. 101.2. Dani gets off the phone with her mom. I take my temp again. 101.4 FUCK!
during chemo a fever sends you to the doc or the ER if its after hours. I call the on-call anyway. She sends me to the ER. For some reason we drive. stupid. We're kind of in a state of panic. once there they take my vitals. I'm down to ~99.5. So we wait. I hate waiting. I'm so tired of waiting. I tell Dani I'm thirsty and feeling dizzy. She goes up and tells the registrar. I get the next room. It's pediatrics but I get the next room (shhhhhhh. don't ever do that at home, kids). And it's pretty. Unfortunately it's also a big diaper/formula supply room. Oh well. I was tired and wanted a bed.
I won't go through the details of a teaching ER again. Or the fact that its still summer so it's chock full of inexperienced fucks. Or that the student missed my vein twice. That would all be redundant.
The fever disappeared. Several things could have caused it, including taking a massive dose of antibiotics.
however, my WBC (White Blood Cell) and Absolute (Absolute Neutrophil Count) counts are 1.4 and 460, respectively. I'm in the basement. After only 1 cycle. I'm at a High Risk rate for infection. This is my week off from chemo. My weekend off from chemo. Now I have to avoid people.
Into the ER at 8:30PM. Out at 1:30AM.
And my week destroyed.
Wednesday, August 22, 2007
In the meantime I can think of nothing funnier than having a rug shaped like a "D".
Wouldn't it be nice if they could comatize you through chemo? I wanna eat but it hurts. I wanna drink but can't. I wanna crap but its painful. I wanna sleep but it escapes me. My tongue hurts, my teeth hurt, my arm hurts, my kidneys hurt, my intestines hurt.
The pain will spike and I wince. Dani wants to help, needs to help. But there is no relief. I just have to ride it out, a wave of pain. I sit in silence, wincing, sometimes biting my tongue near the sore....somehow it helps. Sometimes I can't remain silent and I cry out. Then it's gone. For the moment.
Comfort escapes me
It's not the bullet but the fall.
Gonna go pop lorazepam, compazine, ibuprofen, and I think some sominex.
Fuck it all.
I'd kill to be wasted right now. I'd kill to wake up in a hospital room, Dani looking down on me, and it be December....Cancer Free...
I'm a selfish fuck.
Tuesday, August 21, 2007
2006 new cancer cases in the US: 1,399,790
2006 estimated cancer deaths US: 564,830
How silly will we look in the future?
Sunday, August 19, 2007
Inner tremor, right foot
High Blood Pressure
We Get to the Clinic and they put us in a room with another dude. He will be the first of two we share the room with. Both have it "easier" then me, in terms of time spent. I will be there from 0930-1600. Takes about 2hrs to make my drugs then 4 to deliver.
Phil's Cocktail (In Order, Based On Weight):
358ml SGN-30 Antibody/Placebo (Saline)
265ml Pegylated Liposomal Doxorubicin
Total = 946ml
We ignore the dude for a while but feel bad and start talking. He seems familiar. Being DC, he is compelled by law to ask us what we do. "OH", he says, "you're Danielle from World Watch. I have all the reports and go to all the briefings." I just roll my eyes. Meanwhile, the nurse misses the vein everyone misses. I so hate that vein. Everyone wants to try it. NO MORE. She gets me in the wrist. I listen to Dani and our new friend talk. So happy I get to sit back. She gives him a card and he's gone. Then some Hoosier (Missouri slang) takes his place a couple hours later. We leave the TV on loud. He calls someone regarding his gun warranty. I think he has a Skullete but I don't really want to look at him.
How does one pee during treatment, you ask? Like everything else, very carefully. Sort of.
Near The end of treatment I ask the nurse if they can give me something for my mouth sore. I'm having trouble eating. After some wrangling ( some asshole wanted me to suffer more apparently) she gets the OK from a RNP on the study team for "magic mouthwash". We thank her profusely. Magic Mouthwash is a catch all. Mine has diphenhydramine and Lidocaine. Yum.
We go to the CVS Pharmacy and pick it up. Insurance won't cover it. assholes. It's $35 for a month(?) supply. Get home, open the box, and there it is: a big bottle of stuff with two tiny powder filled bottles. On the box are instructions:
TO THE PHARMACIST: MIX BEFORE DISPENSING.
What a Fuck. It's not the first time he's been a slack ass motherfucker to us. He's like a disgruntled cashier with a Pharmacy degree. Love CVS (On P st. Next to Whole Foods, the middle eastern pharmacist. ;) ). So Tired of him, I shot off an email to corporate before going back and letting Dani yell at him.
I mix the diphenhydramine and lidocaine in and swirl. Then swig. Hmmmmmm, chalky strawberryish numbing goodness. Drrrrrrooooooooooooooooooooooooooool
I take 5ml/4x/day. I also swish my mouth with baking soda/water every chance I get. I have two Major sores on the right underside of my tongue. After chemo I notice one on the roof of my Mouth. Sunday, there's one on the left of my tongue and both sides of my inner cheeks. It's the tongue sores that suck. I can't stretch my tongue at all. I can't use it to help chewing. Try to conciously not use your tongue while eating. I have to gurgle with liquid after chewing to clear all the food bits out my tongue can no longer help with. It fucking SUCKS!
I can handle the near constant nausea and most of the other symptoms. You might even think everything's peachy when you see me. Mouth sores are hell and I can't feign an Okee Dokee face when they're bothering me.
Sunday, Dani's making dinner. The brandywine tomatoes smell phenomenal. I beg her for a taste. Maybe I'll be OK. I pop a bit into my mouth. Pure succulent heaven. Then I feel it. Like acid on an open wound. I chug ginger ale to neutralize it.
Why'd this have to happen in Summer?
Thursday, August 16, 2007
See The diagonal red line, middle right? That's my vein. Just upstream, diagonally left and center is a bruise/rash. And maybe just above that and touching (below the mole) you can see the injection site. It hurts on and off. The vein discoloration is most likely chemo but I have to be vigilant for septicemia. Five days post treatment. I may need a port. I'll only get it if they say my veins are being obliterated. I don't need a constant physical/visual reminder of this shit.
I cut back on my anti-nausea meds on Tuesday. Cut off anzemet after 2 days, replaced it with compazine, fearing I wasn't getting anymore for the month. The low level nausea isn't going away. My appetite is non-existent, my mouth has sores, maybe a clot (black spot), I feel dizzy sometimes. I was constipated for the first few days, passing the occasional brick. My first chemo wasn't this bad. Not right away. I didn't expect the second time to be worse. It started to get to me.
Sometimes I get this throbbing in my neck, like my pulse has shot up and all the blood can't get through. Sometimes it causes a headache, sometimes that travels to the base of my neck. This one started before chemo and after surgery.
Dinnertime. Hamburger with cheddar, tomato, sauteed onion. Shoestring FF, black bean and tomato salad. Some of my favorite comfort food. ALL Organic, all local ('cept the fries?). The burger was wonderful. All of it wonderful. I was having a hard time "clearing my mouth" due to the major sore under the back of my tongue. Then I started to fell a surge of nausea after each bite. Nothing big. Just a slight increase. I struggled a bit to take each bite. How much of a struggle? Don't now. Perception is key here. Went from really enjoying my meal to having to focus on taking a bite and keeping it down. the degree in change might miniscule. But the perception is huge. From enjoyment to non-enjoyment. Is there a degree of difference in between?
All within the first week of chemo. It was too much.
I finished up, cleaned my plates and stole to the bedroom. Laid down and broke down. As quietly as I could. Hoping to not upset Dani. Fat chance I had. She came back wondering if I was in pain. Don't think I've ever just imploded like that. I could barely speak, asked her to hold me. And there we lay. Then she got up and gave me what I needed most. A Mental rallying. A talking to, a talking with, battle cry after battle cry. I can not do it justice. We will fight the good fight and we will win. Fuck you cancer.
Thank you, my beloved.
Sunday, August 12, 2007
Warmth & shortness of breath continue into Sunday. Didn't feel nauseas really. Afraid to pop an Anzemet due to potential supply issues. Afraid not to. So, after some coaxing by Dani, I popped it. Vein doesn't look so good at entry point. Skin Red/rash. May have been obliterated. Mediport may be an most unfortunate neccesity.
I've had no appetite since chemo. I eat to keep my strength up.
There still seems to be some confusion. let me clarify:
Q: New Cancer?
A: This is the same cell line that tried to kill me before. A PET scan early after treatment picked up rapid cell growth. Which is not unusual after chemo - the bodies trying to rejuvenate. Remember - I presented with late Stage IV Hodgkin's. It had traveled throughout my lymphatic system, attached to Organs, growing on them as well. My body was wracked with B-Cell Tumors. The CT scans probably couldn't penetrate the residual scar tissue left behind by the larger dead(ish) tumors. Some cells survived and proliferated like cancer cells do. I hate this fucker
Q: How about alternative Therapies?
A: You wanna take that gamble with your life. Have at it. Tell me how many people you know that have done it. And does insurance cover that shit? Are you sure you would do it? I didn't think twice.
Q: Sugar feeds cancer. You should stop eating sugar
A: Cancer feeds Cancer. I can't stop it or slow it in any measurable way by cutting out what sugar I consume
Q: You should see a Nutritionist
A: I married a Nutritionist.
Saturday, August 11, 2007
I'll label these as such so y'all know they'll be the daily minutiae of how I feel and can thus ignore them. I feel compelled to keep better track. Lats night popped a Lorazepam at 1030 and a compazine at 1100. Then to bed. Woke at 0345. Wide awake. Not really upset by it. Not really shocked. Had a slight headache. Dani would be up soon for the Farmers Market. Hung out. and decided I could try and go back to sleep. Slept from 0430-0800 with a few waking moments. Felt a little nauseas. Slight headache. Might be dehydration...might need to flush toxins still.
No appetite. I really didn't expect the symptoms of chemo to hit this fast. last time I recall it as an accumulation throughout. Having a hard time drinking Coffee. Popped a Precious Anzemet at 0800. My Precious, need my precious........where's my precious? Precious? Hopefully it'll restore my appetite. My vein is almost completely healed. Hope they can take it. I so don't want a port.
I should mention last night that before popping a Tylenol I paged the on-call onco. You really need to be careful about which OTC's you take. I was chastised for taking the wrong one during Hodgkin's 1 (H1). The on-call was unfamiliar with my regimen but thought either should be OK at 600mg/6 hours only. [sarc]I feel relieved[/sarc]. At least she was absolutely honest. I believe Tylenol was what I was allowed last time so I stick with it.
Also last night my anger was hard to controll. I was going near ballistic at all the fucks in Whole Foods. It didn't help Dani that the drive there was a bit of an adventure. I forgot we were going and the I almost turned down a one way. My mind was a haze.
At home, after dinner, she tried to entertain me. But I didn't want any of that. She went through our movies, our games. I lacked the ability to make any decisions. Then I got really angry when I couldn't find my H1 folder for the on-call number.
I feel like my mind is going to mush.
I feel so sorry for putting Dani through all this again. She hates when I apologize for It. Her Mom called last night and I talked to her for a bit. I apologized to her for what I was putting them through again. I know what everyone's thinking but it doesn't change how I feel and it was weighing heavily on me.
Love You all.
Friday, August 10, 2007
June 26th - PET scan results (atypical cells in neck) discussed with Oncology Doctor. Doctor discovers swollen Lymph Nodes in Left armpit through palpitation.
June 28th - MRI Scan for pinpointing lymph nodes.
July 1st - Consultation appointment with Surgeon
July 6th - Surgery - Lymph Node Biopsy
July 13th - Oncology appointment - Pathology confirms Cancer Relapse
July 16th - Stitch removed from neck. Surgeon relieved I'm aware of the results.
July 20th - Bone Marrow Biopsy
July 31st - Sperm Donation. Diagnosed Fertile
August 1st - Bone Marrow Negative
August 3rd - Second Sperm Donation
August 2nd - Heart Sonogram. Signed Consent
August 6th - Full Body CT Scan
August 10th - Chemo.
Sixty days since my abnormal PET. 4 weeks since confirmation.
I get there at 9AM. And head to The Clinical Research wing. Used to be inpatient. Private room with restroom, Bed & Cable! Blood draw and wait for results, drug mix. I think I started around 1130.
Pre-meds; Anzemet (cancer ant-nausea) and Dexemethesone (Steroid). Yay. All infused.
What Exactly, do I have?
A Research RN popped in to my room while I was getting my pre-meds. I asked her for a copy of my CT, standing order for blood draw, what not. She comes back with that, plus my MRI report. How nice. I look through them. I notice the ICD-9's. CT has 202.8. MRI 201.9. I pull yesterdays physical from my folder (always have your folder): 201.9. Typo? Or are we all not in agreement of what we've seen and what I have? I try to maintain my cool. Dani's in the room reading. And asks if everything's OK. "Sure". I'm plotting. I need this frikken clarified before they start filling me with toxic shit that might do nothing for me. I wait for the RN to come back. Hopefully she'll understand without me needing to spell it out and needlessly panicking Dani also.
me: I'm sorry. My ct has a 202.8 diagnosis and my doc says 201.9. I think I need that clarified. For peace of mind
Numbnutz: I'm not sure of the difference?
I stare at her, hoping she'll understand and just go get it clarified. She doesn't. that's just wishfull thinking. Course no. Post-doc. Brain full of everything but patient sensitivities.
Me: Well one is Hodgkin's. One is Non-Hodgkin's Lymphoma. Dani turns white. I turn to her and say "I'm sorry." Then to the nurse: "I'd like that clarified, please." She leaves and we wait. What if? What if? She returns a short while later and says "typo". Some fucking typo, numbnutz.
Infused with anibody or placebo. 1ml/min for 30 minutes. Caution. Then given the rest faster. I start to feel symptoms from the Anzemet.
The Nurse then does a slow bolus of the first drug (V), then I get infused with "G" & "D".
Done at 4:30. Fatigued, tired, dizzy, unfocused, annoyed, vein is slightly bruised, above and below entry point. We leave. Kind of laughing. I believe we are both surprising our feelings. It's all so fucking surreal.
Popped a compazine at 530. preventative nausea.
Popped a Tylenol at 8ish.
Starting to feel some muscle pain in thighs around 9. Sore throat around 10. They said this was less toxic than ABVD. Doesn't mean less side effects, eh?
1 done, 11 to go. If Insurance doesn't authorize more anzemet I'll need to look for alternattive anti-nausea medication. I Love Brownies....
Thursday, August 09, 2007
I start tomorrow.
Gemcitabine (G), Vinorelbine(V), & Doxorubicin(D). And the anti-cd3o antibody SGN-30 or the placebo. Yay.
GVD is not FDA approved for Hodgkins and only "D" has been used. I took "D" for Round I. It was the "A" in ABVD (using generic vs non-generic names depending on regimen is the source of confusion).
Saw the Research Coordinator (RC) Nurse, then my doc today. I signed a HIPPA (Health Insurance Portability and Accountability Act) ,so they can look at any future records, and the Protocol. Technically, I have had tests and appts while on study. So I back dated the documents per the RC's request. "Back dating". Brings back memories for some, eh? Makes me think of Ben. LOL!
My doctor was quite displeased with the RC RN. Her calender was fundamentally wrong. My chemo is 21 days including a week break. So chemo on Day 1 and Day 8. The next round starts on Day 22. She was starting me on day 21 which was staggering my chemo day. She was also not scheduling me for labs on my off week. My Doc called her as I left the exam room. I love it when she gets pissed.
Also Filled my scripts this week. Sort of. Got my compazine & Lorazepam but insurance only "covered" four Anzemet's. "Too" expensive - cost them ~240 for the 4, 35 for me.
But the bottle says "99 refills"? The drug may just be for pre-chemo. Meaning I'll only need 12 total. I'll have to straighten that out tomorrow.
I need a Lorazepam.
Not sure what tomorrow is gonna be like. But I'm thinking it won't be pleasant. Emotionally. I remember walking out of the Hospital, arm in arm with Dani, after my last treatment. April, 2006. If I could guess, I would say it was 4/27 at 4:29 PM. I'll check it later. I can't describe the feeling. We were done. We won. It had been such a long fight. It was such a satisfying victory. Quite and so dignified. We walked quietly, letter our minds absorb the moment and all the battles. How sure we were that I was done. How good that felt.
I'm not looking forward to the walk out tomorrow and I know Dani is not, either. But I don't regret my feelings. And will think the same thing in November. When we take that final walk out of chemo. We will celebrate our victory in silence again.
Wednesday, August 08, 2007
To be honest, I feel fucking fabulous!!!!! I have no cares right now. I feel stoned outta my mind and all is wonderful. It's a beautiful world we live in......a sweet romantic place..........LOL! This euphoria is indescriable, and so needede.
For weeks I've been tweaking. And now i feel fine. Everything else can go fuck its self.
Y'all are beautiful. Life is beautiful
Monday, August 06, 2007
Went in to sign consent form for study participation. Then I was sent up to have a echocardiogram (sonogram) of the heart. Blood drawn. Vitals taken. I'm 120/110 (stress). Vetoed, with the help of my Dr., my appointment for a Mediport on Tuesday. Today, Monday, I had a full body CT scan and the research nurse asked me to "think about" getting a mediport, under the advice of the Head Infusion Nurse . Mediport is surgically implanted delivery port. They never need to search for a vein after that. You have to be knocked out for implant procedure.
They wanted me to have one the first time around and I refused. The nurses were OK. We are suspicious that they want to do it b/c it makes their lives way easier. The chemo can damage veins and they warned me about a specific one but I'm gonna do some research. Just don't fully trust them. I believe the Infusion nurses relaxed once they saw my veins on the first go around. Hopefully I'll be OK. There's something very demoralizing about having a port attached to me the whole time I go through chemo. It's a constant reminder that we don't need.
Update radioactivity 11/05-8/07:
1mSv = 100mrem
PET = 7mSv
CT = 10-12mSv (whole Body scan)
MUGA = 8mSv
1 MUGA = 8mSv
4 PET scans = 28 mSv
8 CT scans = 80-96 mSv
Total = 116-132 mSv
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
5800 x-rays and counting
Now I have to go and see what GVD is as opposed to ABVD
Thursday, August 02, 2007
Another Doctors appointment. Only this time Dani would not be with me. Although it was at 25th & M, NW and close to her office, she felt she couldn't go. And was adamant about it. No biggee. I walked to the bus stop and waited. A few minutes passed and a Bus approaches. It's big digital destination sign is flashing "EMERGENCEY!" Followed by "CALL POLICE!" What to do? It stopped for me so I got on. With a little trepidation, I'll admit. The few people on where very relaxed, one on a cell phone. So I relaxed. The sign was obviously broken. Post 9/11 World is much more fun, eh? Except this bus was getting stopped nearly every block by concerned citizens and by buses going the opposite route, twice. That was just damn annoying.
Off the bus at Dupont Circle. I have to hoof it ~.5mi. I arrive and am the only patient. I wondered if they do that on purpose? I fill out the requisite forms and wait. I notice they had awesome Magazines! A Traveler with an article about restoring the US Plains ecosystem ("Buffalo Commons") and a National Geographic with a great article about the Finger Lakes (NY). I wanted to take 'em. I vote it Best Doctor's office for reading material and recommend everyone go there.
Soon, the doctor comes out and looks at the forms. He tosses one that we don't need and hands me a consent form the Admin Assistant forgot. She must be new. He takes me back and shows me the room. All I can think is "no way. It's too small. Too sterile. I knew I should have had a drink or two before I came." he shows me the specimen cups and the magazine rack, asks me how long I've been deprived and leaves. there I am in the tiny room:
Oh well. I spread the surgical cloth on the chair, grab a cup, label it, grab some magazines, and take a seat.
Forward View from my Bank Chair:
And to the right:
And on the door, out of view, are hooks for clothes.
Playboy, Penthouse, and Stuff. I laugh and think "Pictures of Nekkid and not so Nekkid women? I'm not 18. Next time I'll bring my own material. The pages are quite tattered (LOL) and I put that observation right out of my head. Luckily, I have been Master of my Domain since Friday and I am, if i can admit, a bit of a horndog. And I think being in that room, at a doctors office, for the purpose at hand (pun soooooo intended), was a bit of a turn on. At least I was wearing shorts. I'll spare you the rest of the details. Unless I get comments asking for more. ;) :D
I should add it's not as fun as one might think. The room isn't sound proof and the cup is small so you have to kind of stop and make sure you don't miss. Especially if you're worried about the outcome (they just kind of...come..to me as I type. I swear!) And it's not exactly my first choice for location. So, while I can't say I rushed myself, I certainly didn't take all the time I wanted. Still, if there is no stimulation going on during the point of no return then it's kind of a disappointment. It's sort of an anti-climatic climax. But I'm a guy (and maybe an unusually horny guy) so I can't say I wasn't enjoying my time there either. If I can steal and modify a movie line: "It's kind of like pizza. Even when it's bad it's still kind of good."
And certainly it's the best type of Doctors appointment imaginable, no?
So I finish up, go out and ring the buzzer to the lab. the doc comes out, puts gloves on and takes the sample. He wants me to wait. I haven't had an analysis ever. Chemo might have left me sterile/in-fertile. He can have a decent analysis in 20 minutes and refund me.
I go back to the room. There's a couple waiting. I smile (my wide kind of creepy/psycho smile) and nod at them, thinking they must know. They must know that I was, as Dani's friend Miyun put it; "jerking off into a petri dish." I was oddly amused by the whole thing. It's a complete fertility clinic. I sit and call Dani. She says "Your done? It's only been 30min??? Yes. I'm stroking (again, I really can't help it) my ego. i thank her and explain I'm waiting. I pick up the mag and start reading about Buffalo commons again. having difficulty with it. Sterility scares the crap out of me. What if I'm sterile and I need a Bone Marrow biopsy? I might as well not exist. I try not to think about it. After an agonizing wait he comes out.
"Your sperm is fine and there's plenty of it. See you Friday" I thanked him and the receptionist and walk out, chest puffed, Cock of the Walk (just so frikken easy).
No, I didn't shake my Doc's hand before I left. And for some reason he didn't offer. Wish I had a good cigar. Or at least a cigarette. I felt a little tired ;) but so alive. Humor aside, this weighed on me heavily. It was a huge psychological boost for me. Did I dare dream my Bone Marrow was OK? I tried not to think about it. For fear of jinxing myself.
I need a drink.....
I get to do it again on Friday after I'm all charged up again. This time I'll walk in and out like Cock of the Walk. kind of like when I used to buy condoms. Trying to not so subtly let everyone know "Yes. I'm having sex." This time it'll be "Yes. I'm fertile as hell. I can do anything. Can I help you?". Men can be such guys, no?
BTW - while insurance will pay for Viagra, it does not pay for freezing Sperm. Draw your own conclusions. They want at least 2 samples. $250/sample plus $30/month storage. We don't really have that kind of money. So a very special thank you to my Mother-in-law for helping out (Make your own jokes).
Honestly, though, it was a huge moral booster and psychological victory.
Friday came and went. Unfortunately I got the same room with the same reading material. I was feeling kind of bored so I didn't spend as much quality time with myself. But overall I would say I had a hard day at the office.
Wednesday, August 01, 2007
Cancer Patients, Lost in a Maze of Uneven Care
The first doctor gave her six months to live. The second and third said chemotherapy would buy more time, but surgery would not. A fourth offered to operate.
Karen Pasqualetto had just given birth to her first child last July when doctors discovered she had colon cancer. She was only 35, and the disease had already spread to her liver. The months she had hoped to spend getting to know her new daughter were hijacked by illness, fear and a desperate quest to survive. For the past year, she and her relatives have felt lost, fending for themselves in a daunting medical landscape in which they struggle to make sense of conflicting advice as they race against time in hopes of saving her life.
“It’s patchwork, and frustrating that there’s not one person taking care of me who I can look to as my champion,” Ms. Pasqualetto said recently in a telephone interview from her home near Seattle. “I don’t feel I have a doctor who is looking out for my care. My oncologist is terrific, but he’s an oncologist. The surgeon seems terrific, but I found him through my own diligence. I have no confidence in the system.”
It was a sudden immersion in the scalding realities of life with cancer. This year, there will be more than 1.4 million new cases of cancer in the United States, and 559,650 deaths. Only heart disease kills more people.
Cancer, more than almost any other disease, can be overwhelmingly complicated to treat. Patients are often stunned to learn that they will need not just one doctor, but at least three: a surgeon and specialists in radiation and chemotherapy. Diagnosis and treatment require a seemingly endless stream of appointments. Doctors do not always agree, and patients may find that at the worst time in their lives, when they are ill, frightened and most vulnerable, they also have to seek second opinions on biopsies and therapy, fight with insurers and sort out complex treatment options.
The decisions can be agonizing, in part because the quality of cancer care varies among doctors and hospitals, and it is difficult for even the most educated patients to be sure they are receiving the best treatment. “Let the buyer beware” is harsh advice to give a cancer patient, but it often applies. Excellent care is out there, but people are often on their own to find it. Patients are told they must be their own advocates, but few know where to begin."
No confidence sums it up well
19 days since Confirmation
12 days since Bone Marrow Biopsy
Yesterday, to mark the 50th day since my PET scan, I call the RN case manager (the doc's goto Nurse) and the research RN and ask the usual question: WTF? They didn't call back.
This morning Dani asks if I'm gonna call. I say "Fuck it. Fuck it all." Tension rises. Fucking Cancer.
She calls the Case Manager and asks "WTF?" I'm at the computer, my back to Dani and there's a long silence. All I can think is "Fuck. Maybe I'm being paranoid? Fuck"
I turn to look at Dani. She says "There's some unanswered questions. They may have to do another biopsy."
"Fuck!!!! What does that mean? Is there another cancer present? Is it Leukemia? Did they Fuck it up? I would have killed to have my bone marrow clean. Fuck! Fuck! Fuck!"
The RN is reading the report to Dani. The look on her face is not good.
Just then my Doc calls. She starts to tell me I'm going on study. i ask about my Bone Marrow. She asks, confused, if her RN called.
I say "My wife is on the phone with her and there seems to be some "unanswered questions" regarding my bone marrow. My doc says "I think every thing's OK. let me pull up the results."
Dani is off the phone, staring at me.
"Yes. Your negative. They had to perform some extra stains but every thing's OK. We'll get you in her tomorrow and you'll start treatment next week."
I get off the phone and tell her my bone marrow is fine. She slides to the floor, cursing the RN, crying a little. I pour a drink. The last of my Makers. Fuck it.
Did you know Case Managers often know dick about Medicine?
Fucking Assholes. Fucking Cancer.”
The research RN called. I go in tomorrow for a MUGA, hopefully. Told her Friday is out due to another engagement (more about that fun later). get a CT scan on Monday and start chemo next week.
I feel so relieved. I really wanted to keep my bone marrow. It's a huge psychological win. It is me, after all. And I still really like me.
Monday, July 30, 2007
49 days since the Positive PET Scan
17 days since Confirmation
Friday, July 27, 2007
I wonder how many people die by leaving everything up to their doctors?
46 days since the Positive PET Scan
14 days since Confirmation
Thursday, July 26, 2007
Wednesday, July 25, 2007
I can't compare this anxiety to anything....”
44 days since the Positive PET Scan
12 days since Confirmation
Tuesday, July 24, 2007
I felt most like a lab animal during my MRI and my last Surgery. More like a restrained Monkey than a Human.
Fun with Monkey's
And remember - if you take it, touch it, slab it on, or it touches your food, it's been tested. No matter what that label tries to imply. "Final product has not been tested..." is a good one that comes to mind. Think about it next time you consider buying the next "new & improved" headache pill, or a pill so you can eat crap all day.
1000's died so you could eat that chili burger.
Reminded me of Mornings pass - the Morning after we put The Kitty to sleep. The MorningS after I was diagnosed with Hodgkin's. You wake up feeling good for a split second before you're Crushed. I have a vivid recollection of dreaming, as a very young child, that my father was still alive. Found unharmed. And then waking up. Crushed. I think my last pleasant dream was of The Kitty. I remember too few pleasant dreams.
I guess that often makes Morning one's worst enemy.