Damn The Cancer - A look Back

This is the monodrama of Damn The Cancer in it's rawest form - feedback appreciated.

It will be coupled with the six or seven comedy sketches from the other Damn the Cancer series - all bound together in one evening as "Neoplastic Residue" or something along those lines.

FYI - the other shorties can be found on Lulu.com. Includes The Great Akua Speaks to Malohinis, Processing Loss, Quitting Time, Contrary, Him and Her at the Park, Psychc Friend. I am also working on a small companion short called "The Wait" - which is about GvHD and the characters I've seen and heard on my frequent visits to Hackensack lately.

So here is the brainslop that needs to be refined. . .

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Neoplastic Residue, part one (unformatted)

Idea for my DTC show. Section one. . . Thirty-four

and cancerous


*

Thirty-four and cancerous

I'm thirty-four and cancerous. Cancerous is such a

volitile word. So wrought with meaning. I have

cancer? But it doesn't have me! Corny, ain't it? I

have a neoplasm. I have Hodgkin's lymphoma. I am

currently diagnosed with a disorder. I am a

diseased, untouchable, wretched thing. My body has

had more toxins injected, infused, and imbibed than

should be allowed by law in that Holy Grail quest

for a cure. I have something that is harmful and

abnormal in my system. I am afflicted with a

pathological condition that will most likely cause

my untimely death. There are a lot of words for

disease, which I am diseased, such as canker, bug,

cancer, ache, affection, attack, blight, breakdown,

condition, debility, decrepitude, defect, disorder,

distemper, feebleness, crippled, ill health,

illness, indisposition, affliction, infirmity,

malady, misery, pathosis, plague, sickness,

sickliness, syndrome, unhealthiness, unsoundness,

scourge, trouble, woe, rot, tumor, carcinoma,

lesion. I am sick. I don't feel sick. I don't ever

feel sick until they try to cure my sickness with

the dreaded chemotherapy. Cancer.


I have cancer. I'm not sick. It's not cancer. It's

not “C”. I didn't catch the cancer or get “the”

cancer. I simply have it and I'm dealing with it the

best way I know how. Which is to say, I really don't

know how. I've tried anger, drugs, depression,

humor, masturbation, writing, art, singing, learning

a language, raising my son, acting, writing,

directing, doodling, sitting on the couch and doing

nothing, starting a new business, and anything else

that might strike my fancy in order to deal with it.

The fact doesn't go away that I have something

inside that is trying to kill me. There is no

deflecting the ugly truth from that little tidbit.


They say. Those stupid fucks. They're always saying.

They say to keep positive. I don't want to keep

positive. It's impossible to keep on the sunny side

24 hours a day and whenever I might lull into a

depression I'm told to stay positive or keep

positive or be more positive. What am I, Mormon? Am

I simply protons without electrons? The positive

without the negative? I tell you it's impossible to

be exclusively positive. If I want to gripe and moan

and bitch and whine and eat nothing but steak and

chocolate for an entire day while playing a video

game because I'm trying to deal with death, let me

do, alright? Fuck. Can't a guy get a break? Keep

positive. Yeah, great, keep positive, but we don't

want you to change. I'm looking at the ultimate

change, I think I can afford to be a little dark

once in a while.


Fucking reapers. I see them everywhere. Every time I

go into a medical building, whether it be my

oncology office or a hospital. I can smell them. I

see them grinning their little smiles, gripping

their little scythes, perched on the shoulders of

sleeping patients fighting for their lives. I know,

they're just doing their jobs. I'm trying to live

here, so excuse me if that gets in your way, Mr.

Reaper man. Go have a cigarette and wait for me. I'm

not ready to go with you. I have things to do.

Things in big capital letters. I'm not afraid of

going with you, I just know that 34 years was not

enough. Hell, four of them I was busy staving you

off for a little bit longer. Not ready to go. When

I'm ready, I'll be ready. I'm sure you're busy with

other things. Hey, I have an idea, you can sit on my

couch and watch TV or read some books while you

wait. I know I'll have to go someday, just not

today.


I'm really not scared of dying. It's just that I

like living too damn much. Thirty years. Is that

enough to live? To live a good life? I know, I

should be thankful for the thirty. Some don't even

get that much time. How much time is enough time?

How much time is the rest of your life? Is it

another 40 years? Another ten years? Next year?

Tomorrow? Little phrases like that have new weight

in this brave new world of toxic drugs and constant

doctor appointments. The rest of your life. Think

about the rest of your life. What will you do with

it? What will you do about it? Will you spend it

frivolously contemplating just how much time it is

or will you just say fuck it and roll with what each

day brings?

--------------
in media res

I always had some weird premonition that I would die by the time I was thirty. I didn't. I have proof. All of you have proof. I'm not a ghost yet. I needed to rush and do the big plan by the time I reached that magical number or poof, everything would be gone. I always had some sort of plan. Cancer kind of takes that ability from you. No more world-building. Down to brass tacks and practical living.

In 2001, the magical year, I was twenty-nine, a newlywed and had a bright future ahead of me. I was making decent money as a designer and I was also the founder of my first baby, the South Jersey Shakespeare Company. We performed Romeo and Juliet to. . . lukewarm response at best. But it was fun, it was my dream, and it was realized.

I also married Stephanie, with whom I am still madly in love with despite her urgings of “patience” and “keep positive”. It was a wonderful wedding – July 15th, 2001. We had it at Tomasello Winery in Hammonton, New Jersey. The day, a refreshing, resplendently gorgeous day of bright blue skies, warm sunlight, and idyllic puffy fronds of clouds was filled with merriment, and wine. Lots of wine. We loved it so much we want to get married again just for the wine.

It was a perfect day. Our mini-honeymoon at the Jersey Shore was wonderful as well. I believe that was about the time that Johnathan, our first-born, was conceived. It's not like we waited to get married, it just fell out that way. Hell, it was such a good mini-moon that we even WON money in Atlantic City.

We came back to reality with Romeo and Juliet, opening that show to. . . lukewarm response at best. Have I said that? It needed to be re-emphasized. I also pissed off some friends, or at least people I thought were friends, with that show and that company. It was about mid-August when the show opened, and when I noticed I wasn't breathing as well as a twenty-nine year old should.

My health was fine, no matter what, because I wouldn't go to a doctor to let him or her tell me otherwise. Besides, I didn't have insurance. Didn't need it. I was in my twenties. Of course, it didn't make me stop smoking or stop eating fatty foods or start any extra exercise. It just told me I was a fatty and out of shape.

By October of 2001, during our real honeymoon to Hawaii, I noticed my breath was very short and there was something weird in my chest. Still, not enough to warrant going to a doctor. Are you kidding? I didn't have insurance and I'm sure I would be fine if I quit smoking or started exercising.

So I quit smoking. I have to be honest. I didn't quit because of my health. I quit because they cost too much. I was subsidizing other people's habits and I couldn't afford that anymore. My design work was only trickling in and the theatre company was momentarily stalled, so I needed to save my pennies. I figured that quitting would help me breath easier, so to speak.

A few months later, the strangeness in my chest had grown. It was a lump. My wife noticed it around December and she and her mother had a conversation in front of me about it at Christmas dinner. I was certain that it was something that had happened as a result from a particularly nasty dive I took while playing volleyball. Probably my chestplate shifting or something. Still, you weren't going to get me into a doctor's office.

In February of 2002, the shortness of breath was really affecting my quality of life. During a producton of Macbeth (oh shit, did I just say Macbeth in a theatre?) I had a particularly intense broadsword fight with some murderers. Every night I felt that I had really died after that fight and it took me a good fifteen to twenty minutes to catch my breath. I attributed it to my previous smoking habits, the nasty theatre air, and the particulant matter of fog used extensively in the show.

It wasn't long after that I developed a cough that would wrack me so violently that I would throw up. It would happen in the worst places. I also had trouble climbing stairs. March of 2002 I finally became worried enough to schedule an appointment with my doctor. It was not an easy thing to do, having no insurance and seeing my little theatre company finally gaining some ground. We were touring Charlie and the Chocolate Factory and I was absolutely no help with load-in, load-out. I was feeling horrible and a horrid thought struck me while talking with a friend at a bar.

A colleague of mine was in his thirties, had a child on the way, and was active in the local theatre community. He developed stomach cancer and had to undergo some major surgery and chemotherapy. He was a big guy. He didn't think much of it, but a routine doc visit found some abnormalities and it turned out to be that fucking relentless disease. I told my friends that it was my worst fear. I never wanted that to happen to me.

I began to get nervous in the time leading up to my doc visit. I was rapidly approaching 30, my life-termination age, and had a child on the way – both a month and days away. I made an appointment with my family doctor – when I did have insurance, and scraped together the payment for an office visit.
Prev: Damn the Cancer, Rant from Treatment, "Cancerous"
Next: Damn the cancer, rant from treatment, part 3 - Whirligig of Visits

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*

Whirligig of visits


“So, why are you here today, Mr. Fauver?”


ME: “Shortness of breath.”


“Uh-huh. Anything else?”


ME: “I have a bit of a cough.”


“Uh-huh. Do you smoke?”


ME: “I did.”


“When did you quit?”


ME: “October 2002.”


“Okay. You expect to feel better after you quit smoking, don't you?”


ME: “Yes. I figured it takes a while.”


“Anything else?”


ME: “Yes. I have this lump sort of thing. I think my collar bone shifted or something. See this is in the middle of my chest and it should be my pec muscle, right? And right here is a protrusion of bone?”


“I'd like to listen to your chest.”


ME: “Okay.”


“Hmm. I'm going to send you across the street to the hospital for a chest x-ray and some blood work.”


ME: “Blood work?”


“Simple blood tests, that's all.”


ME: “But won't that require a needle?”


“Yes.”


ME: “I hate needles. Are you sure we have to do bloodwork?”


“Don't worry, just go get the tests done.”


ME: “Okay. But I don't have insurance.”


“You're going to need it. Ask them for assistance, for charity care for the x-ray then get yourself insurance.”


ME: “My wife has insurance, but I'm not on it. It's through the state because she's pregnant.”


“Well, Mr. Fauver, I suggest that you enroll in that plan as well. Go have the x-ray and then we'll see what's going on and go from there.”


ME: “Okay. Let's go, hon.”


“Mr. Fauver, I need you to fill out this paperwork for the charity care. Step into this room, roll up your sleeve. You'll feel a pinch. One vial. Two vials. Three vials.”


ME: “What are you, a vampire?”


“There you go, please wait in the waiting room until you are called.”


ME: “Okay. Don't worry, Steph, I'm sure it will be nothing.”


“Mr. Fauver, come this way. Take off your shirt, stand in front of this, take a deep breath in, okay, please wait.”


ME: “I'm sure it's nothing. I had an accident playing volleyball a while ago and my collarbone is screwed up. Everything will be okay, Steph.”


“Oh my God. Look at this.”

(whistle)


“Mr. Fauver, Dr. Nemore would like you to go back to his office to discuss the results of the x-ray and lab work.”


ME: “Okay.”


“Mr. Fauver, it looks like you have a mass in the center of your chest, your mediastinal area, about the size of a tennis ball, maybe bigger. There's also an enlarged lymph node on the left side of your chest. There's also some evidence of pleura around the lungs. I'm going to suggest you have a CT Scan and I'm going to refer you to a surgeon to have a biopsy done of the node.”


ME: “Okay, I'm not sure what all this means.”


“Mr. Fauver, it looks like you have cancer.”


Pause.


Pause.


Pause.


ME: “Are you sure? It could be something else, right. Don't worry honey, it will be okay. Calm down. Calm down. It could be something else, right?”


“We won't know for sure until we see what's in that lymph node.”


ME: “She's really emotional right now. She's due in two weeks.”


“I remember when I was diagnosed. The same thing happened. I was in shock. My wife was the one that was crying and carrying on and emotional. The emotions didn't really hit me until later.”


ME: “But I'm only twenty-nine. What does this mean?”


“Well, after the biopsy confirms it's cancer, you'll probably have a port-a-cath put in under the skin then undergo chemotherapy, possibly surgery and radiation, depending on the type of cancer.”


ME: “What do you mean type of cancer?”


“For instance, I have pancreatic cancer and that's treated differently than someone who has non-hodgkin's lymphoma or lung cancer or leukemia.”


ME: “Whazza-whoosie-whatnow?”


“I am getting chemotherapy right now, through this pump.”


ME: “Okay. . .”


“Go home, make the appointment with the surgeon and relax. There's nothing you can do about it tonight.”


ME: “Okay.”


“Just go over to the hospital and pick up the contrast on your way home.”

ME: “Okay. You ready, Steph? You okay?”


ME: “I know. I know. I feel the same way. It's been the worst day of my life.”
Prev: Damn the Cancer, rant from treatment, part 2 in media res
Next: DTC, RFT, part 4, In Memoriam and Hope

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*

In Memoriam

Two weeks from my initial doctor visit, I was encumbered by several things I had never confronted in my life before. The prospect of a barrage of needles, which I detested and loathed and feared. Surgeries. CT Scans and x-rays.

I also held auditions for an ill-fated summer season for my theatre company, which cancer be damned was going forward.

I met a surgeon, a large man with white hair, a New England accent, and a typical surgeon's arrogance and lack of bedside manner. He cut out a lymph node and it could not be accurately determined what type of cancer was lurking within me. It looked as though it was a sarcoma, which is a cancer of the connective tissue like muscles and ligaments and tendons and such. The option for sarcoma is amputation of diseased extremity. Unless, of course, it was in your chest, your medistinal area, like mine.

It was another black day of bad news, meeting with Rhode Island Doc, and another day of me taking my pregnant wife home and the two of us lying in bed, exhausted emotionally. We were surely tired of the bad news. My family gathered and was very supportive, though they came from an entirely different culture of cancer, where the “C” word was whispered, it was caught, and it meant the inevitable burial in Holy Spirit cemetary.

My family had quite a history of different cancers, though no sarcoma's or non-hodgkin's lymphomas. Mostly cancers of organs such as lung, liver, breast, cervical, uterine, stomach, intestine, and pancreas. On my mother's side, my grandmother was fighting lung cancer after surviving breast and skin cancer. She lost that battle in January of 2003. My Aunt Barbara Jean had cancer eat her from the inside out and it killed her without her knowing what the hell was happening to her. From the coroner's report, there was barely a spot of non-cancerous material in her body, though I think I might be exaggerating a bit. Both were smokers.

On my father's side, a side of good German and Native American stock. Hard working class people from a notorious section of town known as the Third Ward with an undeniable work ethic and warped sense of humor. My Uncle Joe, Bud as he was known, was a smoker for years and a plumbing instructor at the high school, not to mention an avid golfer. He died in 1995 of lung cancer caused by asbestos. My Uncle Larry, an MP during the Korean War, ended up dying from liver cancer. My Aunt Gloria, leukemia. My grandfather Russell, intestinal and stomach that rotted his insides before he knew what hit him. My Uncle Bud, pancreatic and liver cancer, most likely side effects from not only smoking, but from other chemicals he was exposed to in Vietnam. My grandmother Rose also had cancer, cervical cancer, and was treated in the mid-fifties with cobalt radiation. The 1950's. She died in 1995 from natural causes.

Even in my neighborhood there seemed to be an unnaturally high number of cancers, from Pat Janecki, who died of Lung cancer to Tom Buckley – who was fighting non-hodgkin's lymphoma during my fight as well – who died in 2003. His brother Joe died of cancer as well, and it might have even been lymphoma. All within a block of each other.

It's easy to see why cancer raises the grim visage of death. So many people are dropped to their knees because of it's effects, it's hard not to draw an instant conclusion. I was going to fight it, though, and I met the man who would help me do it.

Dr. Kush Sachdeva met us in late April and gave us the one thing that no other doctor had so far – hope. He was confident that we could treat and cure the disease. He was not so confident about what the results were, so ordered more studies, another lymph node biopsy, as well as a bone marrow biopsy and aspiration. He thought that because of how my symptoms were presenting, it might be Hodgkin's Disease, a rare lymphoma that is not as famous as it's more nefarious cousin, Non-Hodgkin's Lymphoma. He also thought it might be testicular cancer. He was right with the Hodgkin's.

It was happy news. Sort of. Shitty that it was cancer, but it was the “good” kind. The “curable” kind of cancer. Curable in quotes. The meeting with Dr. Sachdeva where he told us the diagnosis and prognosis and treatment plan was May 6, 2002.

I remember the date because I remember we left feeling hopeful for the first time since our intial doc meeting. I remember the date because it was my grandmother's birthday. I remember the date, because when I came home from rehearsal that night I had to rush my wife to the hospital so labor could begin. The next morning was the very best day of my life, as Johnathan Franklin Fauver was brought into the world.

With my newborn to encourage my hope along, I readied for the next important phase: chemotherapy.
Prev: Damn the cancer, rant from treatment, part 3 - Whirligig of Visits
Next: DTC, RFT, part 5, Chemotherapy and You

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*

Chemotherapy and You


VO as changing into hospital gown, delightful music plays, reactions to VO throughout.

“How can you take care of yourself during chemotherapy? You can eat the right foods to build up your strength. Stay away from people who have colds or the flu. Get the rest you need and pace yourself. Talk about your feelings to deal with any sadness, anger, or fear you may have. Work as a team with your health care providers. Knowing how to help yourself can make you feel more in control. These are just a few of the ways that you can help yourself and begin to feel in control again. “


VO as port is accessed

1.

The treatment of cancer using specific chemical agents or drugs that are selectively destructive to malignant cells and tissues.
2.

The treatment of disease using chemical agents or drugs that are selectively toxic to the causative agent of the disease, such as a virus, bacterium, or other microorganism.

VO Settling into the chair

ABVD is a combination chemotherapy regimen that was developed in the early 1970's as an alternative to MOPP which was highly myelosuppressive. ABVD is now one of the most common chemotherapy regimens for treating Hodgkin's Disease.

The following are the drugs used in the regimen.

*

Adriamycin (generic name Doxorubicin)
*

Bleomycin (common brand name: blenoxane)
*

Vinblastine (common brand names: velban, velsar, velbe)
*

Dacarbazine (common brand name: DTIC, DTIC-Dome)

This regimen may cause permanent sterility (shown to be less severe than MOPP though). You may want to discuss with your medical team options such as sperm banking or egg harvesting. The harvesting of ova is a rapidly evolving field - please ask about the latest information if you wish to pursue this option.

VO as fidgeting nervously.

ABVD is typically administered in cycles of 4 weeks. Two treatments will be in each cycle, two weeks apart. A common treatment regimen is for 6 cycles which would be 12 treatments spaced two weeks apart. The exact number of cycles given is dependent on the treatment prescribed by the medical team.

Adriamycin, Bleomycin, and Vinblastine are usually given as follows: you have a saline intravenous drip and the drugs are injected into the IV tube while receiving the saline). Dacarbazine is given commonly by a chemotherapy pump which can administer a fixed rate of the drug. If burning or pain occurs from a drug you may want to ask the administrator (often a nurse trained in chemotherapy administration) to slow down the drug infusion. This may happen especially with vinblastine and/or dacarbazine. The use of a port or catheter will allow doses to be given quicker with less chance of irritation.

The doses are determined by square meters of body area. So you don't have to measure every nook they have tables - the body area is approximated from weight and height. Please refer to qualified medical personnel for exact dosing.

Drugs that are often given in the same sitting are:

*

Zofran or Kytril - for nausea
*

Decadron - a steroid, also for nausea (ask your medical team about this drug if you have problems with steroids)
*

Your doctor may have other medications to help you


VO continues get up and roll IV cart to urinal.

If you feel side effects while receiving the drugs in the medical facility notify the staff. Common discomforts are chills (which can be remedied by a warm blanket) and frequent urination which may be discolored (due to the adriamycin - a red drug).


“HOLY SHIT, I'M PEEING RED!”


VO continues as sit back down

Adriamycin – Side effects

Short Term Side Effects: Common: nausea and vomiting (ask your doctor about drugs to counteract nausea), sores on mouth & lips; Less Common: cough, fever/chills, fast or irregular heartbeat, swelling of extremities, diarrhea; Rare: black stools, blood in urine, pinpoint red spots on skin, unusual bleeding, wheezing, skin rash/itching. Adriamycin may turn the urine red which is not blood and should disappear within 2 days.

Long Term Side Effects: hair loss (alopecia) during use - hair growth should return late in treatment or after treatment, possible sterility (weaker than some drugs) and heart toxicity (doses should be monitored)


Bleomycin – side effects


Short Term Side Effects: Common: nausea and vomiting (ask your doctor about drugs to counteract nausea), fever/chills after dose, cough, shortness of breath, mouth sores, itching, rash, loss of appetite; Less Common: confusion, faintness, wheezing; Rare: sudden/severe chest pain, sudden weakness in arms/legs

Long Term Side Effects: hair loss (alopecia) during use - hair growth should return after treatment and lung (pulmonary) toxicity (doses should be monitored).


Vinblastin – side effects

Short Term Side Effects: Common: nausea and vomiting (ask your doctor about drugs to counteract nausea), fever/chills after dose, cough, shortness of breath, mouth sores, itching, rash, loss of appetite; Less Common: confusion, faintness, wheezing, peripheral neuropathy (tingling & numbness in the hands and feet). Rare: sudden/severe chest pain, sudden weakness in arms/legs

Long Term Side Effects: hair loss (alopecia) during use - hair growth should return after treatment and lung (pulmonary) toxicity (doses should be monitored), peripheral neuropathy (tingling & numbness in the hands and feet).


Dacarbazine – side effects

Short Term Side Effects: Common: Redness, pain, or swelling at the site of injection, nausea, vomiting. Less Common: black stools, blood in urine or stool, cough, fever/chills, lower back/side pain, painful or difficult urination, pinpoint red spots on skin, sores in mouth and on lips.

Long Term Side Effects: Some hair loss which should return after treatment, transient (shorter term) reduction in liver and kidney function.


Long term effects of ABVD:

According to NCI (12/98), the risk of acute leukemia at 10 years following therapy with ABVD appears to be less than 1% (vs. 3% with MOPP at 5-9 years).

*

NCI also says lung cancer is seen with increased frequency, and the risk of this cancer is increased with cigarette smoking. Therefore, patients who have been cured of Hodgkin's disease with radiation therapy or combined modality therapy (radiation + chemotherapy) should be strongly urged to stop smoking.
*

Peripheral neuropathy (tingling in the hands and feet) may lessen over time.


GET up very slowly, weakly, throw up in little pink bucket that has a happy face on the side. Sit on stage.
Prev: DTC, RFT, part 4, In Memoriam and Hope
Next: Damn the Cancer, RFT, part 6, Radiation and superpowers

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Radiation and super-powers

Lying on back:

So, will this hurt? Will this radiation cause my swimmers to die? I just lie on this table every day for thirty days a few minutes at a time and cancer cells will miraculously die? Will it cause any other adverse effects? What will this radiation do? The most important question is will the radiation give me super powers?

Sure will. Sure did.

It gave me an uncanny ability to be sarcastic at the least appropriate times.

It magnified my acid reflux to the point where water turned to flames as it would gurgle down my throat.

It, mixed with the chemotherapy, created such horrid putrid smells from my gastrointestinal system that even I would have to leave the room after passing gas. Passing gas is such a right in my home that we have always had an open sphincter policy. After the first chemo and radiation, I no longer saw them as humorous. I saw them as dangerous.

It allowed me to traverse several emotional states within a matter of seconds, transforming from mania to depression to anger to depression to anger to mania to sloth in the amount of time it would take to change the channel.

It warped the perspective of my world and made me think I could do things I could not.

It let me explore the wide wonderful world of black tarry stool.

It unlocked the insight that shit does happen and we have no control over things like these.

It gave me incredible xray hindsight.

But really, the gas. I have to go back to the gas. Anyone who knew me pre-cancer knew my farts were famous. FAMOUS. Even legendary. I would out-LePetomaine lePetomaine. I was fun to have around, not because of my gas creating ability, but to create an audible outburst on cue. I was also a convenient scapegoat, as my friends could cut loose and easily blame me on the cloud. My presence and persistence of gas was a comfort and a matter of relaxation for those around me.

Of course, that changed with the chemo and radiation.

The farts became sulphurous. My ass a gate to the ninth plane of hell. Demons would belch forth and wreak havoc upon cities and dominions with a toot from my anal trumpet. Gabriel's horn has nothing on mine.

My farts were funny before chemotherapy. Now they're a weapon of mass destruction.
Prev: DTC, RFT, part 5, Chemotherapy and You
Next: Damn the Cancer, RFT, The Joys of Recurrence

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Joys of recurrence

I was pronounced clean and in remission as of May 2003. That summer I worked for the Pennsylvania Renaissance Faire, directed Twelfth Night and Othello and played Iago as well. It was time to get back to life and living and pursuing my dreams. During the summer, July, I had an abnormal CT Scan. It was followed up with other tests but nothing was shown. But the shock and fear that something might have come back was very real and very close in my thoughts.

Journal Entry dated 11-29-03

I wish I could complain about the little things. I wish I had a million and one things on my mind that I needed to rail against everyday because of horrible injustices. It's a lie. I don't wish that. I don't wish that on anyone. Complaining about the day's events seems so fucking counterproductive, cause it's all gonna happen again tomorrow and Sunday and Monday, etc. If you don't want to hear about cancer, about the struggle of cancer, intertwined with random thoughts and long digressions into the state of America today, then perhaps you should go elsewhere. Maybe go read a book, or go outside, or pet your dog, cat, self, whatever. Maybe keep living in the sphere of your world where you know you will never die, or maybe if you have an inkling, you know it will be at a far off time. We fool ourselves, all. But I think it's for comfort. Every three months I'm reminded just how close death really is. Every three months I go through the completely gut-wrenching battle with fear of recurrence.

As far as cancers go, I got lucky. Hodgkin's Disease is the curable one. Treatment was pretty easy (bad french accent: you should see zee ozer guy), comparatively. I felt bad the times I truly complained - which was not often (I complained jokingly many times to try to get people not to pity the poor cancer boy). Compared to the cancer patients I shared chemo chairs with, I felt as if I was nursing a bad cold. I felt I had no right to complain about my "condition" when people were struggling for a tiny little glimmer of hope in the sea of incurable cancers while trying to avoid the oncoming face of the grim reaper. I never want to do it again. I may have to. I may have to sit in a chair while they pump my body full of chemicals that make me vomit, make me spew liquid from my butt, zap my energy for half the recovery time, and generally screw up not only my brain and general well-being of psyche and spirit, but also damage other organs - some temporarily, and others for the rest of my life.

"The rest of my life." The implications of that statement. Seems like so long. Like a lifetime. A little joke. Oh, I know it wasn't funny and made no sense, but that's life, isn't it, kids? What is the rest of my life? Will it be constant fear of losing it, watching it end and dwindle and snuff out as one cruel joke, or cruel play, with the audience watching, and thinking they get it. The only one who sees the truth of death is the one dying. We hear about a death or two a day (lately it's been much higher, thanks to the current non-combat post-war in Iraq). What does it mean to us? Another number. Oh, someone died. What a shame. Whose shame? Not the dead's.

Suppose someone closer to us dies. Say an aunt twice removed. Okay, greater implications, as it starts to affect people that are closer to you.

Say a friend dies, whether suddenly, by accident, or on purpose. What does it change in us? How do we feel? Eventually we go on. We say we'll change. We think we've been shaken irrevocably.

Say someone closer dies. A loved one. A wife, a husband, a lover, a girlfriend/boyfriend, a son, a daughter, a brother, a sister. Someone whose fabric we are tied tightly with. What then? How do we move on? How do we take any comfort in any thing? Most of the time, it is such a shock to the system that someone is gone. "They were not supposed to go yet. It wasn't the right time. We were supposed to do a, b, or c still. It's so unfair." They are in our memories. They are in pictures, videos, audio recordings. A movie, a piece of clothing, or a half-eaten piece of pumpkin pie may trigger the memory of that person in a specific action at any time.

Now we step further into it. I am in that casket. When? Maybe next week, maybe six weeks, maybe thirty years from now. When I found out about Hodgkins and started getting warm support from people, a lot of people were like "Great! I knew people who beat Hodgkin's twenty years ago and they're doing well!" Great. That puts me at 51 for my death. Johnathan will be in college (probably), and the yet unnamed, unconceived child will be in High School. If I make it those twenty years. I could do a lot in twenty years, or thirty or forty or fifty. How long is long enough? Could I do what I want to do with what time I have remaining? I don't know how long it is or what I really want to do. Petty arguments are meaningless. I refuse to waste any part of my day praying (others have gladly offered to pray for me, and who am I to stop them?). Should I finish the book I wanted to write? Of course. Do I fear it will be yet another unfinished project. Not really. I don't fear it.

I do fear the three month checkups. Blood work and CT Scans. "Early Detections and Screenings". Each time sends me into a spiral, only made worse when the results come back. July sent me into a tailspin when they found a node in my lung. Great. That means the Hodgkin's regrouped, and localized in the lung. When cancer is localized, it becomes Localized Organ Cancer, ie Lung Cancer. Great. My grandmother died of lung cancer. So did my uncle and my aunt and many millions of others I don't know each year. But I had a gallium scan. This nifty trick of science is pretty neat. They injected radioactive isotopes (Gallium) into my blood stream. The gallium attaches itself to blood cells and travels through the body. When it finds cancer or tumors, it jumps ship from the blood cell and nestles into the gooey mass of neoplasm. Then, about three days later, nice technicians scan my body for any traces of Gallium left in the body (they tell you to take a laxative and drink lots of water so they don't get false reads on bladder or rectal cancers. Some ends up in the spinal cord, but guess what, every thing we put in our bodies ends up in our spinal cords at one time or another. Our spinal cords are like the rings on a tree. Just do a spinal tap to see how wild your college days were. Well, the gallium scan showed nothing but the normal traces of gallium in the rectum and spine (scattered, no order or formation). So, it was a false alarm and we chalked it up to scar tissue or fibrosis of the lung (more on that later).

Still, it shook me up. What if? What if it was a new growth and rapidly spread through my body, eating the insides and destroying me, preventing me from trying to live. Keeping me from my wife. Keeping me from my child. Keeping me from theatre.

What? How is that important? It's the one thing I do. Gimme a break. Not that great of a vocation for someone in Millville, NJ. Didn't expect to still be here. For one thing, I don't want to die here. Right, I can hear it now, "You're not going to die. Stop being so doomsdayish." No, I am going to die. Everyone is going to die. The question is when. Who cares how. So anyway, the theatre grew less important for me in September when I found out it meant a helluva lot less to others than it meant for me. It was and has always been, no matter how much I've clamored about it, "Brett's theatre". Not what I wanted. Sure, I wanted a place to work, but it was never about me or my ego. It was never to say, "You suck, such and such theatre, we do it the right way." or "I hate you, I'm starting my own theatre and doing it all my way." It was about doing good work. But it doesn't call me so much anymore.

So, Radiation is a terrible thing (I've always hoped, publicly, that the radioactive isotopes or the radiation I went through would give me some sort of super power. Nope. Super bad gas, but that's been around for 31 years of my life.) Radiation sickness is a terrible thing as well. All of those comic book superheroes who went through a change would most likely have died from such exposure. My dosage was nowhere near a Nagasaki or hiroshima sized blast, but still, it inflamed my spine, making the back of my legs tingle and burn everytime I lowered my chin (like in a nod). It gave me awful burning and scar tissue in my esophagus and trachea, and made it very hard to breathe or swallow (even stuff like a cold milkshake or warm tea). Gave me incredible heart burn - seriously - whoa - holy shit it hurt - I made the mistake of eating a pepper and felt like I was gonna pass out and stop breathing. Now, I'm used to eating pickled habaneros from a jar and making my own supersalsa that will burn anus hairs. Of course I'd pay for it - re-read the line about burning anus hair. But that little prick of a half-slice of jalepeno nearly killed me that night. Even milk would give me the burning agida. This is not exaggeration. I lost the few hairs on my back (yay!) and on my chest (boo!) and all the hair on the back of my neck and under my chin. It was very odd to see my goatee erode day by day. Also, it created severe rashes and burns on my skin around my neck. Internally, it damged very little of my heart but ravaged my lungs, creating much scar tissue. This was after the chemo destroyed the tumor. This was a "just-in-case" type of thing. And I lost my voice near the end - which sucked ass - cause I was in a play (small part - Sam Merton in The Crown Diamond - directed by my wife). Yes, I was still actively directing and acting among other administrative duties during chemo and radiation. I had to. It helped keep me sane - mostly. I did lose my mind for a while - reality sort of, uhm, went askew. Didn't see anything weird, but perceptions went wacked. Still have some psych damage - mainly the controlling factor. I find it hard to keep impulses tucked away - it's almost a child-like thing. You know right from wrong, but you do wrong or want to do wrong to satisfy the stronger impulse. Yes, on the verge of psychopathic. The frustrating thing is knowing right from wrong but not being in control of satisfaction of impulses. It wasn't as horrible as I'm making it out to be, but any loss of control for me is tough to handle. In my twenties, mainly the early twenties, I sought to not be in control. Yes, drugs, alcohol, sex, yada yada yada. Very dangerous curves. Still kept in just enough check to watch a couple friends crash and burn from alcohol (DUI's and accidents), drugs (letting cocaine take over his life so much that he began the descent that starts with filching twenty bucks from the cash register at work - sad to watch/ helping a friend come down from a bad trip - basically I sat and watched while another friend did it), sex (well, never had any friends crash and burn with this except trying to get out of sticky situations, and even I have gotten into quite a few myself). But lucky for me, I was still able to keep some control. I remember my roomate stayed home from work one day. When I got home, he was very depressed. He was sent home from work for not feeling well and had bloodwork done. It seems he was legally drunk. I know, so what. The last time we went out for a drink was two nights before - and it was the end of a very long streak of going to the bar(s). But we still kept a modicum of control. We still did our day jobs, cooked, ate, slept, cleaned, had social relationships, paid the bills (mostly, but never ontime). We cleaned our cars, made sure we had clean clothes, and lived mostly responsible lives. Hell, it was our twenties.

So now. So now I'm thirty one and faced with the terrifying prospect of not seeing thirty two and not seeing my son's second birthday, and not seeing the final installment of the Star Wars pre-trilogy (may seem petty to you, but Star Wars was my childhood). Why so terrfying? I just had a CT Scan, of course. And bloodwork. And they found a node in my lung. Which means it could be and probably is lung cancer according to the Radiologist - the guy (God, to him, presumably) who reads the CT Scan and makes an accurate report. Problem is, Millville Hospital has had a history of sloppy reporting. Even my oncologist was upset during one of their bouts last year when the results were very sloppy indeed. So, the radiologist says new cancer. The oncologist is worried that it is a recurrence. Everyone is worried that IT came back. Yeah, me too. I'm worried it came back with a vengeance. So I go to have a PET Scan on Thursday to see if it is in fact Cancer or some other lung disease. My money is on Radiation Pneumonitis. What's that? A PET Scan, not to be confused with a CAT Scan, despite their domestic animal reference, have nothing to do with cats, Dogs, or Sugar Gliders (or couch pets). Radiation Pneumonitis? Oh, yet another wonderful side effect of radiation.

So, my radiation ended in May, around my birthday (May 4). Still had recuperation from the immediate side effects. Around beginning of October this year, I started getting a tickle in my throat and a dry, non-productive cough. You know the kind - very annoying, where you cough so hard it feels like you just burst a major vessel in your forehead. Around mid to late October, a low grade fever associated with it. I went to my primary care (should have called oncologist, but he told me to look out for night sweats, swollen lymph nodes, itchy nodes, and other effects of hodgkins) and he gave me some cough syrup, patted me on the head, and said it was nothing. I talked to my radiation oncologist last week (two days before CT Scan), and she said, "Oh yeah, you'll get that, we really had to BLAST your lungs. It takes about two years to heal. Sometimes I prescribe a steroid, but I don't like doing that." Me either. I'm already "puffy" enough. Prednisone or something like that. So I had the catscan and the call from the oncologist's office. I was expecting it, really. "Brett, something came up on your Cat Scan, I'd like to order another test." Deja Vu. So I was expecting it. Still, the news sucks.

So, a little cyber-sleuthing brought me to Radiation Pneumonitis. A Pneumonia like condition that is not contagious that is brought about in 5-20% of patients of Radiation where the lungs were irradiated. Okay. Read on. Onset is 1-6 months from last radiation. Okay. that checks out. It was about five months when my cough started. Non-productive cough. Check. Low-grade fever. Check. Fibrosis. huh? Oh, a stiffening and scarring of the lungs. Right, they said that would happen. Significant change in CT scans. Hmmm. May be misdiagnosed as Pneumonia or Cancer of the lung. Really, how interesting. Tachycardia. Not that I've noticed (It's when your heart goes crazy and starts beating at four times the normal rate - my Mom has it every once in a while - scary - I've probably had it, but I don't know), and Dyspnea, one helluva hard-to-say word. Dyspnea is just a general pain in the pulmonary system, part of the greater COPD problem, of which I am susceptible. Well, I don't know about the Dyspnea or the Tachycardia, but the other symptoms seem to fit. So I called the doctor and asked, straight out, could this be a fibrosis from the manifestation of Pneumonitis? "Yes." Whew. "But, the radiologist doesn't think so. He even called me, which is troubling to me. He doesn't think you have Pneumonitis." But. . . "I understand your concern. I am very concerned for you. How is your wife holding up?" She's concerned, but I have the symptoms and. . . "Why did you not tell me about the cough?" I went to my primary care and he gave me some cough. . . syrup. . . "Well, let's see what this test says. I am very concerned and do not understand. They say it is definately a nodule." But didn't they say that in July and the gallium scan said otherwise? "Yes, that also concerns me." Um, ok. . . "The good thing is, patients who respond well to the first round of chemo generally respond well to chemo for recurrence." That's . . . good. . . "Let us see what the PET scan shows. If it is not a recurrence, we'll consider it Pneumonitis and look into that." Okay. Thanks. *click*

What the fuck! I've never heard him sound so down or pessimistic! Jesus H. Christ! Jesus H. Christ on a high-powered pogo stick! Recurrence? More chemo-fucking-therapy? Oh, man. This sucks. Does every cancer survivor go on this wacked out merry-go-round of life and death every time testing comes up? This completely fucked me up. So I ate Thanksgiving Dinner with my sister, ma and pa, Aunt Carmen, and my nieces Demi and Neva. My wife had to work, but she took John to her mom's, where he is staying until tomorrow. I told my sister and my aunt and my parents. My parents seem to be cool with it, knowing that it goes up and down. My sister and my aunt, naturally, will pray for me or keep me in their prayers. Thanks. I don't need prayer. I need information and evidence and proof of existence of this disease or another. Prayer may help some people get through the rough moments of their lives but to me, it clouds the clarity we should be seeking. It makes us depend on someone. Many call it faith, I call it hope and luck. Prayer for a cure of disease is like a duck-and-cover for nuclear war.
Prayer for strength and courage? I don't need to pray for that. If it comes down to seeing my death as eminent, many will ask me if I am saved. If I want to recant on my death bed and accept Jesus Christ as my personal saviour. No. I will not. I can not. I'd feel as if I were lying to myself. I am content with my spirituality and beliefs so much that I don't need no religion blocking up the view of my personal view of the after-life. I plan to progress through the guts of a king by way of a fish that eats of the worm that digests me.

Am I saved? From what? From the made up way of things? If I were truly saved, then books like Leviticus would be destroyed. Then the world would be safe. Aha! Superman vs. Leviticus! An Action Comics special.

Right now, I am focused on the important things in life - mainly living. Enjoying the love I give and receive from my wife and child. I don't want to fight anymore about stupid shit like idiots who idolize bad movies because they are bad movies. "Dude, it's so bad and offensive and I love it! It's the best movie ever made! Oh, the satirical genius that makes it so bad makes it so good" - typical user post on any given movie at badmovies.com. I don't want to fight with my wife about smoking and the fact that she hid it (badly) for the past couple of weeks. I don't want to fight about theatre. I don't want to fight about anything, I just want to live and seek a life that is useful. Useful how? I don't know, but it sure as hell won't be an offcie job where I become one of the undead cubicle dwellers. I'm by no means done with this rant, but I'm using this as a resting point. . .
Prev: Damn the Cancer, RFT, part 6, Radiation and superpowers
Next: Damn the Cancer, RFT, part 8, A Month of Mania

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A Month of Mania

Journal entry dated December 18, 2003

PET Scan - crap. Bad news is that the administers and readers of the PET Scan found "lesions" in my lungs. Not the best news in the world. Good news is that PET Scans often give false positives when in fact, it merely picks up inflammation and infection - of which there are both in my lungs. So what the hell is going on now? I don't know.

Journal entry dated December 20, 2003

I'm trying. Little by little to creep away from the doom. The doom of my bad gas erupting like Vesuvius and smiting the citizens of the modern day Pompeii.

I think I know what it means.

Journal entry dated Deceember 26, 2003

Waiting for results from biopsy. Waiting still sucks.

So does anxiety.

So does coughing up blood.

But monkeys are pretty cool.

Journal entry dated January 2, 2004

Happy New Year.

Yea 2004. Whoo-hoo. I can't contain my excitement.

Here's for more of the same.

Crap.

Journal entry dated January 2, 2004

Good news/Bad News

Good: It's not lung cancer
Bad: It's recurrence of Hodgkin's
Good: It's Hodgkins, which is still curable
Bad: More chemo, stem cell transplant
Good: I am in good condition physically, and am healthy enough to put up the same fight before when the disease/tumor was MUCH larger.
Bad: It could still come back again.
Good: It is still probable that I could be cured.
Bad: Chemo sucks, and so does a hospital stay.
Good: At least I'll catch up on my reading AND it gives me an excuse to go splurge on something I don't need like a Tivo or GameCube or XBox or something.

G/B mix: If the stem cell is an autotransplant (meaning they take my own before chemo then replace) then there should be no problems. If they have to find a match, then there could be a little complication - death.

I'm pretty hopeful, actually. I got through chemo once, I can do it again. It sucks ass, but I can do it. There are worse things, and I will again meet patients in a lot worse condition than I am in. Really, though, I am glad it's not lung cancer.

Journal entry for January 2, 2004

Interesting Horoscope today. . .

Taurus - April 20 - May 20

"You will get cancer today. . . again."

Hmm. I should read these things more often.

Journal entry for January 4, 2004

10.

The great taste chemo leaves in my mouth.
9. I can use the excuse "I have Cancer" again.
8. Black, tarry stool and red urine.
7. Port flushes.
6. At least it's not (insert other disease here).
5. Doing the "IV shuffle" in the chemo room.
4. Bad tasting meals taste just like good-tasting meals.
3. Can lie in bed all day after chemo treatment and not realize it.
2. Super-duper low-maintenance hair "cut".
1. Chemo farts

Journal entry for January 12, 2004

Have you found Christ? Yes, he was hiding in the closet with Buddha.

So, my wife and I go to my sister's house for dinner last week. Oy fucking vey. Actually, it wasn't bad. That is, until her 6'9" aryan-looking ex-marine republican conservative christian wants to take me for a ride to get some coffee at Wawa. I said sure. I fell into the fucking trap. I couldn't believe it. On the way home from the second Wawa (the first one didn't have the Caramel Steamer - which my wife wanted, so we went to another one that was nearby), he pops the fucking question. The question I'd been waiting for.

"So, I don't know, Di doesn't say much, but have you found Christ? Do you have a personal relationship with Christ? What's your relationship with God?"

"Well, Mike, (laugh) my relationship with God is just fine. It's very personal."

"That's okay. That's okay. Have you accepted Christ as your saviour. As all our saviours? Do you believe in the bible?"

Normally, I would tear into someone who asked me this question. Instead, I took it easy on him.

"No. It's a good piece of literature, but I don't think that it's any less or more important than any other book. I think the old testament is a lot of old guidelines on how to live and the new testament is just the apostles telling about the life of christ. But I don't think it's 100% accurate."

I usually follow this up with the old "Pope's chose what books went into the bible and what did not." The book of Thomas is not apocryphal, but it shows such a deeper understanding of Jesus as a man and his faults, and it also shows how Thomas' writings were antithetical to attending church. As L. Ron Hubbard says, (paraphrased) "If you want to make money, don't write, start a religion."

Anyway, he started in about how Jesus saves and through his sacrifice, that's the only way we get into heaven. He then asked me what I don't like about the church. I told him I don't like the hypocrisy. "Oh, the Catholic Church?" "No, just about any church I've attended in my life." He then explained to me the two types of people who don't go to church but are good people - those that think they will be able to do it on their own without Jesus' help, and those that think they have to repent before going to church. Oy fucking vey. I just kind of shut down and nodded as he blabbed on about how I needed to be saved. I feel a bit cowardly at not telling him what I actually believed, but I did not want to start a war with my sister (we get along great, as long as we don't discuss politics or religion).

Do I tell him, "Oh, when I die, I'll get on a train that will take me to a station somewhere where everyone sings in a cabaret about life and death and everything in between before they get shipped out to their next destination, whether it be reincarnation, the Christian Heaven and Hell, wormfood, or whatnot. St. Peter won't wait for me at the pearly gates, and I will not be embraced by Jesus and ushered into a room with other Christians so we can await the rapture." Of course I don't. Do I say, "I don't believe in that. Please let me have my beliefs." Of course not, because most born agains have this obsession that they MUST save everyone. Leave me alone, I'm comfortable with my views. They are PRIVATE! Oh, shit, here we go with the abortion talk. Christ. Right, right, Bush is a godly man because he wants to ban abortions, because killing feti is wrong. Right. But death penalty is right? How about unjust wars? How about stepping on the impoverished? Yes, that's very Christ-like. All through high school, college, and after. Always the testimonies and how Christ helped others and could help me. So could God. Through the grace of God all things happen. Hey God! Thanks for the Cancer! And George W. Bush! And 9/11. And for any number of atrocities that happen every day. "Oh, but everything happens for a reason." Do you really believe the bullshit you're feeding yourself? Anyway, I ended up in the kitchen with my wife and sister and niece, talking about video games, and Mike went in the living room to watch 60 minutes. We sat around talking for a while, and it helped me relax after the short interrogation from a God-Squad member. My sister suggests we move into the living room to talk, where we can sit in comfort. Great. So we all watch TV for about half an hour. Finally, I'm ready to leave. Outside in the car, I can't wait to tell my wife that he finally asked the question. I thought it was pretty funny, but frustrating.

Speaking of frustrating - No news on the cancer front. Shit. Just days of frustration. UPENN won't take my insurance, so I have to find another place to get a second opinion ("you're also lazy"). So I stopped coughing up green blobs, and now I have a head/chest cold - same as my son. Shit, one thing after another. Oh well.

Journal entry for January 16th, 2004

I tried teaching him the word 'fart', but the 'f' and the 'r' really elude him right now. He tries, though, and he knows what it means. If I say fart, he usually replies 'stinky'. he knows what stinky means, as he has run into a bank of bad air and said the word repeatedly. No, instead of 'fart', his grandmother taught him the word 'boom-boom', which I don't really like but I'll go along with. This morning, as I was feeding him some Oatmeal, I noticed a peculiar smell. I asked him if he farted, if he did 'boom-booms'. In classic Brett fashion, he stared at me, smiled, and farted, then laughed. That's my son, no doubt about it.

It's all in the timing.

Journal entry for January 19th, 2004

Never knock on Death's door. Ring the doorbell and run like hell, he hate's that.

Author unknown

Health Update email January 21st, 2004

Went to UPenn today, talked to a very nice doctor. Unfortunately, UPenn will not negotiate with Horizon and Horizon will not negotiate with UPenn on letting me have additional visits or treatment. Grrr. So, my best bet right now is Hackensack University Hospital (or something like that) for the salvage chemo (ICE), the high dose chemo and the autologous stem cell support (she called it rescue). It is not lung cancer, it is Hodgkin's Disease that has moved to the lung - this is particularly good news - relatively speaking of course. So my odds are now 50/50 with this treatment, and because of my health and me having no symptoms, the salvage chemo has about an 80% effectiveness rate (especially since the ABVD was effective, just not quite enough). I fell into the 15% of folks who standard treatment doesn't work for, and she told me I may have been stage IV, but no tests were done on the pleural effusion. Eek. So after salvage chemo, they check the cancer's response, and if the response is positive, then the administer more chemo to try to get the disease out of my system as much as possible, then take stem cells from my blood and readminister them with high doses of growth drugs - Neupogen or Neulastin. Then I have a hospital stay for 4-6 weeks to recover from the near-death that they send me in hopes that I'll recover. After recovery and release from hospital, I have about 100 days of close observation by doctor's office. After that - I should be cured and I NEVER want to go through it again. EVER. Once was enough, twice tries my patience. A very good chance that my swimmers will no longer function, and it was recommended that we not even try for a child for at least a year after recovery.

Man, this sucks ass.

But I gotta do what I gotta do. This is not going to be fun, but I plan on living. I plan on living for a lot more years - I promised.

Journal entry dated January 23rd, 2004

So it looks like I start chemo next week. A lot sooner than expected. Shit. Fine. I want to start this and get it over with. It looks like they may forgo the heart and lung function tests and just dive into the chemo. Three days next week of infusion of chemo drugs, then as soon as my blood counts climb back up, three more days, and then one more time for good measure. After that, CAT Scan to see how well the cancer responded (if it's still lurking around or not), a bone marrow biopsy, then off to Hospital X for the High Dose chemo infused for 5 days, then autologous stem cell rescue (if my stem cells are okay). Then the lengthy stay. I hope I can bring my laptop with me, but I probably won't have internet access.

Can I get those meds for anxiety and depression now?
Prev: Damn the Cancer, RFT, The Joys of Recurrence