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Me, My Enbrel, My Cancer:
91 days of coincidence
by Ed Dewke

Wednesday, January 29, 2003 — Day 1

In the shower this morning I noticed my left testicle was about twice the size of the right.  Twice the size and heavier, denser.  This scared me.  The first thing I thought about was an email I received from Harold E. in which he referred to a PubMed article suggesting a possible association between anti-TNF biologic drugs and lymphoma. Might there be an association between swollen testes and Enbrel, too?  How much did we really know about Enbrel’s side effects?  How much did we really know about swollen testes?

I called my derm’s office right away and explained my discovery to a nurse. The PA who usually sees me, Ms. A, called me back shortly. She said she’d heard nothing relating a swollen testicle to Enbrel therapy.  She recommended I get in to see my general practitioner as soon as possible. I called Dr. V’s office and spoke to his head nurse. He could not see me until Friday — day after tomorrow.

This evening I made my wife look at the swollen testicle, feel its heft and hardness. She, too, became alarmed.

In bed, before I went to sleep, I was super-conscious of the organ, the way it lay inordinately pressing against my thigh. All through the day I had become more aware of it. A man doesn’t normally “feel” his testes dangling between his legs unless they are injured or itch from a germ or fungal invasion or a skin condition (like psoriasis).  But today I “felt” my enlarged testicle all day. The feeling became more acute as the day aged. By bedtime I was aware of the strain my swollen organ placed on my scrotum, of the added tightness of my jockey shorts. An itch had begun.  During my preparations for bed I did my best to examine my scrotum carefully. Typically there are flexural psoriasis lesions there and I could see them, still, but there was an added measure of inflammation that seemed to engulf the whole left side.

How could I not have noticed this until today?

 

Thursday, January 30 — Day 2

It seems to weigh twice as much today.  I know that’s not possible.  I know it is my heightened awareness of what’s dangling there, and the amount of thought I simply cannot help but devote to it. It occurred to me this morning that my next dose of Enbrel is supposed to be tomorrow.  Should I take it?  It was worth another call to Ms. A.  She seemed somewhat alarmed that I had not seen my GP yesterday, nor am I planning to today.  She did suggest that I hold off on the Enbrel until I’m seen.

This set me more at edge, so I called Dr. V’s office again. Was there any chance, I asked, of being squeezed in today? The same nurse had a hasty conversation with Dr. V while I was on hold, then reported:  “You should go to the hospital emergency room. They can examine you and report to us so we have something in hand for your appointment tomorrow morning.”

So I went to the hospital emergency room this afternoon and, after waiting for over an hour, gave up.  People were moving in and through the waiting room with assorted traumas (some bloody) and my swollen testicle seemed an ill-considered waste of this facility’s time.  When I left the ER, untreated, it was less than twenty hours before my appointment with Dr. V.

Tonight I could not tell if the testicle was any larger, but the scrotum seemed more inflamed — stretched thinner if that was possible.

   

Friday, January 31 — Day 3

My appointment with Dr. V was at 8:00 a.m.  After taking a good look, he made these statements. 

You are too old to have testicular cancer, though it feels like a tumor of some sort.

You may have epididymo-orchitis which we can treat with antibiotics.

He gave me a prescription for an antibiotic and had his nurse make an appointment with a urologist (Dr. H, who had treated me for elevated blood “PSAs” three years ago, including a very uncomfortable prostate biopsy). The earliest I can get in to see Dr. H is next Thursday, February 6.  Meanwhile, I will be on my course of antibiotics (ciprofloxacin hydrochloride, a.k.a. cipro).

 

Wednesday, February 5 — Day 8

It has been over a week now that I have been living super-conscious of my testes. Mind you, there has been no pain — though I have gone to some pains to ensure this awkwardly large organ would not be knocked about in play with enthusiastic grand kids. 

The related thoughts that have been most on my mind are: “How long have I had this condition, whatever it is?” and “Is it likely connected to my use of Enbrel for psoriasis and psoriatic arthritis?” 

In addition to missing last Friday’s dose of Enbrel, I have now missed Tuesday’s, too.  I’ve put at the top of my list of questions for Dr. H, tomorrow, the likelihood of an association between my enlarged testicle and my use of Enbrel. Hopefully he will suggest there is no association and I am free to resume my Enbrel therapy by Friday.

However, I have not lost sight of another unhappy fact. So far, Enbrel hasn’t done a thing for my psoriasis. In fact, my skin, scalp and joints (yes, P-arthritis, too) are worse than they have been in four years (since I started methotrexate in 1999).  After a year of anxious waiting on the “approved list” for Enbrel, it would be mighty disappointing to learn the drug doesn’t work for me. I’m coming up on three months of use and am hoping I can continue to try for at least six months.  I have heard that Enbrel may take up to six months to show appreciable results.  More than disappointed, I will be incensed if I learn Enbrel has caused this swollen testicle.

Thursday, February 6 — Day 9

Dr. H echoes Dr. V’s doubt:  “You are too old to have testicular cancer.  That’s a young man’s disease.  But it definitely looks and feels like a tumor.”

“What about the antibiotic I’m taking?”

He shrugs. “Continue the course of cipro, but you don’t have epididymo-orchitis. That’s typically quite painful. I want you to have an ultrasound of both testes. That will give us some indication. And I’m going to have your blood checked for tumor markers.”

“If it’s not cancer, what could it be?  Can you treat this with medicine?”

He had been scribbling notes and paused.  “The chances are the testicle should be removed. In fact, I can go ahead and schedule the surgery for next week so we have the room.  If these tests suggest an operation isn’t necessary, I can cancel.”

The surprising thing is that this news doesn’t surprise me. I might lose a testicle.  I find myself inexplicably grinning and Dr. H looks at me weirdly. I say, “That’s okay.  I’m done with it.  I’m a grandfather already.”

He grins, too, then resumes his note taking while I put my pants on.

Tonight, while we were preparing dinner, I tell Clara that I’m too old to have testicular cancer but it’s highly likely I’ll have to have the testicle removed, anyway.  “I’m going to ask if I can keep it,” I say, deadpan. “In a jar.  A fancy jar.”

All Clara says is, “No, you’re not.”

 

Monday, February 10 — Day 13

I return to St. Joseph’s hospital — site of my memorable liver biopsy in 2001 — for my ultrasound. Arriving, checking in, being processed through outpatient is the same as it had been for my biopsy.  My liver proved to be fine after a year on methotrexate and another year on cyclosporine.  Whatever the outcome today, I know my testicle is not fine. 

The technician who must conduct the ultrasound is a lovely young oriental woman. She does her best to make me feel comfortable. I remove my pants and briefs behind a screen, mount the examination table by myself and cover my lower half with a sheet, after which I say “okay” and she emerges from hiding on the other side of the screen. 

She seats herself on a stool to my right and pulls the portable ultrasound machine in close to her.  This machine is a computer with a peripheral device that looks like one of the older “handheld scanners” that were popular before flatbed scanners. Then she says:  “I’m going to roll your sheet up.”  And then the moment we’ve both dreaded comes and goes.

“I guess you’re not going to have difficulty determining which of those is my problem,” I say.

She smiles. “Actually, for the record, I’ve got to ask you which testicle is the problem.”

I’m tempted to say the right one.  But I don’t. 

She enters data into the computer (the monitor faces away from me, so I can see nothing). “Are we going to videotape this for posterity?” I ask.

“No.”

“Will you tell me if it’s a boy or a girl?”

“More than that, I will publish my finding in the New England Journal of Medicine and we will both become quite famous.”

I like her. Me and my testes relax.

She had to scan both testes and I found myself feeling mildly embarrassed by the relative smallness of the healthier of the pair. The sick testicle was hefty.  It took considerable ultrasound goop on the left side of my scrotum to give her the lubrication she needed for her hand scanner. By comparison, the right testicle was a diminutive thing, seemingly prepubescent.  It suddenly occurred to me that, if the left one had to come out, only this tiny sibling organ would be left.  What about my hormones?  Could this bitsy thing manufacture enough testosterone to replace the Giant? Or would I lose my beard and grow breasts?

I think these thoughts would have brought on hyperventilation were it not for the deft ministrations of my tending technician. The hand scanner moved silently through its jelly, over, beneath and around my balls.  Her touch was slight and sure and not ticklish. A younger man might have had difficulty with the procedure. Certainly a man not preoccupied with the outcome would have found her dexterous attentions, well — attention getting. My reaction was less eventful. I was relieved that it didn’t hurt.

 

Wednesday, February 12 — Day 15

Dr. H called. “The ultrasound confirms that you have a tumor. Of course, we won’t know what kind until we send it to the lab.”

Stupidly, I comment, “So.  It’s coming out.  Tomorrow?”

“I’m all set,” he says.  “Are you all set?”

“I’m set,” I say.  “Will my beard fall out and will I grow breasts?”

“No. Your other testicle will provide all the testosterone you need. All your functions should remain normal.”  All your functions was said with an emphasized diction to imply, I’m assuming, sex. 

“So will I have, you know, stitches in my scrotum?”

“No. I won’t even cut your scrotum. I make the incision in the very bottom of your abdomen.”

I have a sudden vivid memory of 1969, the United States Public Health Service Hospital in San Francisco (now defunct), an open ward with 60 male patients — Merchant Mariners and Coast Guardsmen — all post-ops of one sort or another.  I am a patient who had a pilonidal cystectomy.  A very young Coast Guardsman in a bed close to mine had an ingrown testicle withdrawn from his abdomen down into his scrotum. He told me through taut lips and moist eyes that this procedure should have been done when he was an infant. “At my age,” he complained, “it’s like trying to force an egg into a pop bottle without breaking the shell.” (In fact, the procedure resembled orthodontia.)

The movement of a normal sized testicle from abdomen to scrotum was a slow agony. But here and now, Dr. H is proposing to move my Giant testicle from my scrotum into my abdomen in a big hurry. I assume it cannot be done in whole—

“What do you do,” I ask, “cut the testicle up then pull the pieces out through the abdomen?”

He hesitates and looks away.  “We’re getting into that area of more information than is good for you. But, no, I won’t dissect the testicle. We want to send it whole to the lab.”

As is usual, when I am nervous, my mind seeks humor — a relief valve. “Well, my wife will be relieved,” I say. 

“Why’s that?” Dr. H asks.

“I told her I would bring it home in a bottle and she didn’t like that idea.”

“Well then, I’m sparing her that trauma.  No extra charge.”

 

Thursday, February 13 — Day 16 

Clara drove me to the outpatient surgery center and remained with me throughout. We arrived at 8:00 in the morning and the sizable lobby was already filled.  The existence of facilities like this reflects a profound change in medical practice during my lifetime.  When I was young, undergoing a surgery without a few days hospital stay was unheard of. Now, outpatient surgery centers like this one — a lobby for patients and families, a locker room for staff, and a row of operating rooms — are busy all over the United States.

Our wait in the lobby was brief.  More paperwork to complete and then, almost immediately, they called my name and Clara and I were led to a long, narrow room with a couple of dozen bed-sized gurneys lined up and separated by curtains. One of these was mine.  The nurse who showed us in told me to disrobe, put on the proverbial backwards gown, place all my belongings on the shelf under the bed and await further instructions.

A nurse appeared in short order to read my vital signs and start an IV. Then she did something I did not expect. She removed a black Sharpie marker from her skirt pocket, uncapped it, handed it to me and said, “I want you to mark an X over the testicle we’re removing today. I need to watch you do it.”

I suspected this had something to do with liability. “What if I make a mistake?” I asked.

She shrugged and raised her eyebrows.  “They’re YOUR testes, Mr. Dewke.”

I raised my gown, spread my legs, and marked a proper X over the Giant in the left side of my scrotum. 

Then I handed the Sharpie back to the nurse.  While she was capping it and returning it to her pocket I said, “You know, after the President signs a new law, he often gives away the pen he used.”

The nurse said, “Hmmm.”  Then she excused herself. 

Clara was looking at me with a curled lip.  “What?” I asked.

“Not everyone shares your sense of humor,” she said.

It was my turn to shrug.  “I’m a little off,” I said.  “I need drugs.”

And, propitiously, at that very moment the assistant to the anesthesiologist arrived.  After he introduced himself I said, “Well, good!  My humor’s fading fast.”

“I’ll be giving you something to relax you in just a moment,” he said.

A few moments passed in chit-chat and I finally came round to asking the assistant anesthesiologist if it wasn’t time for me to receive that something-to-make-me-relax.  He said, “I have to wait until Dr. S — the anesthesiologist — arrives, which should be any minute now.”

Choreography was fantastic today.  Once again, right on cue, the actor arrived. This time it was Dr. (Miss) S, who exchanged good-mornings with her assistant then turned her attention to me. In very few words she described how I would be anesthetized for today’s procedure.  Her assistant was going to give me a general relaxant “that tends to make people forgetful” via the IV prior to my leaving this staging area. As a result, I probably would not remember my arrival in the OR. She told me what she would be using to keep me under during surgery — a gas, the name of which I can’t remember, delivered through a tube in my throat.  She said this was a preferred substance because side effects upon regaining consciousness were either non-existent or negligible.

I told her I remembered coming out from under ether when I had my tonsils removed as a boy.  She shook her head and said, “No more.”  Ironically, this made me feel a pang of nostalgia. I was so sick from the ether, all I could eat and drink for a day was Jell-O and 7-Up which, for me at the time, was like taking a wrong turn to get to the right place. 

No sooner had Dr. S left than Dr. H arrived.  “You’re just in time,” I said.  “Another minute or two and Igor, here” — indicating the assistant anesthesiologist who was at that moment injecting my relaxant through the IV — “would have had me in Never-Never Land.” 

Dr. H was still wearing his windbreaker and toting a knapsack, which looked strange in the hands of this man whom, I’m guessing, was my age or slightly older. He did not look like a urologist who performed surgery. He looked more like a young veterinarian come to geld a horse. 

“I just wanted to remind you, before you’re out of it, that I’ll be making an incision in your lower left abdomen, just above the groin. I’ll have to cut some muscle there, so you need to take it easy for at least a week, until you come see me. No lifting.  Don’t even sit down or stand up fast.  Is this your wife?”

I introduced them.

Dr. H went on, but now to her, “I expect the surgery to take 30 to 45 minutes. When it’s over I’ll come out to the lobby and let you know how it went.  He’ll be in recovery for about an hour and then, if all goes well, we’ll bring him back here and have you called back from the lobby.”

By the time this was said, the assistant anesthesiologist had injected all of my relaxant.  I remember saying to Dr. H as he departed, “See you in a few, doc!” And I remember saying goodbye to Clara. And I barely remember being wheeled — bed, possessions and all — out of my curtained area.  But I don’t remember the OR at all.  Nor the recovery room.  The next thing I remember is waking up right where I’d been; Clara sitting right where she’d been sitting.

“How ‘ong ‘as it ‘een?” I asked groggily.

“How long has it been?  About two hours from my seat,” Clara said.  “I imagine from your point of view about a minute.”

The muscles I needed for laughing were too lethargic to work. I tried to smile and then concentrated on how I felt.

I removed the sheet that covered me and peaked beneath my gown. The apparatus looked suspiciously unharmed.  At first it didn’t even look like a testicle had been removed. But I was experiencing something akin to a mother after delivery. All that stretched tissue doesn’t go away instantly. Later, I learned from Dr. H that fluids filled the cavity where the organ had been and it would take weeks for these to be absorbed.

I checked but could not see the incision because it was heavily bandaged.

How did I feel? How does one usually feel after a general anesthetic and invasive surgery?  I knew that for the rest of today I would probably feel — well — neutral. They would prescribe a moderate, probably narcotic, painkiller and tell me to take it “in advance of need.” Mostly I anticipated lethargy and a desire to do nothing.

 

Friday, February 14 — Day 17

Actually, when I got home yesterday I felt too good to do nothing. I stayed out of bed but Clara watched me closely and pestered me not to make too many trips up and down the stairs to my attic office.

Next Thursday I am to return to Dr. H for a post-op evaluation. He will also have the lab report on my testicle. Hopefully we will learn precisely why it became a Giant.

 

Saturday, February 15 — Day 18

Last night I did not take a prescription pain killer.  I regretted it today.  I also have a better appreciation for why doctors advise us to take our pain pills “in advance of need.”  They’re really better at preventing pain than eliminating it once it’s present.

 

Monday, February 17 — Day 20

My scrotum and my penis are black.  It is really alarming.  They have been getting blacker since Saturday.  It started, first, as a smallish bruise on the left side of the scrotum. I thought this was pooled blood and wasn’t, at first, alarmed. But it just continued to grow — and the skin coloring changed from blue to black.  Now it looks like the whole apparatus has died and could fall off at any minute.

I called Dr. H earlier today about my black genitals and he called me back late today. He said this is expected.  It is extensive bruising caused by the trauma to the entire region. (Even my penis?)  Blood is flowing freely under the skin everywhere in the area, he said. Since it’s pretty much all discolored, now, things should start to improve.  It will take a week or so but it will all gradually return to normal.

This eases my mind enough to take advantage of the situation. When relatives visit I say the pain is excruciating and all my genitalia are black.  Since I don’t show them, Clara confirms this. Result?  I’m getting a lot of sympathy.  It also helps if I walk slowly, legs spread slightly, and wobble. Moaning while I walk helps, too.

 

Thursday, February 20 — Day 23

My post-op appointment with Dr. H (urologist and castrator) was this afternoon. He came into the examining room and said right away, while taking a seat. “The testicle was cancerous, but of the seminoma type.” He looked at me and said, “This is all good news, believe it or not.”

Over the past few days I’ve looked up “testicular cancer” in a number of my books and on-line resources.  I was aware from this research that seminoma testicular cancer is considered the most responsive to treatment and is virtually 100% curable if detected in time.  It is fast growing in the testicle, meaning the organ can become a tumor quickly — and concomitantly grow in size — without a parallel likelihood of the cancer spreading (metastasizing).  I also read that this cancer effects men in their twenties and thirties.  Hm.

Dr. H went on: “We want to do another CT scan and then run you through a course of radiation therapy.  I’m going to have you see Dr. M, a radiation oncologist.”

“So, it’s not over,” I said.

“The chances are very good that we have cured your cancer completely by removing the testicle.   Standard practice, though, it to treat you as though you were one stage further along in a cancer progression than you really are. If your cancer has spread, it is most likely in the lymph nodes in your lower abdomen and groin.  We’ll do a CT scan to see if there’s any indication of this. But even if there isn’t, we’ll want to treat you with a course of radiation therapy as though there were an indication. The radiation will further reduce the likelihood of anything cropping up later.  Are you okay with that?”

“What are the chances my cancer was associated with my using Enbrel for psoriasis and psoriatic arthritis?” I asked.  “I started the Enbrel therapy, which was two 25 mg doses a week, by subcutaneous injection, on January 6. That was 23 days before I noticed the swollen left testicle.”

Dr. H was quiet and studied his notes for several long seconds. “This type of cancer can come on fast,” he finally said, “but that would be awfully fast.  I don’t know of any association between Enbrel and seminoma type testicular cancer.”

“There is some question about a possible association between Enbrel and lymphoma. Is there a relationship between seminoma testicular cancer and lymphoma?”

“Not really. They are different things.  Are you still taking Enbrel?”

“No. My last dose was Tuesday, January 28. But I am beginning to flare something awful and would like to resume taking it.”  I showed him my hands, where the last section of each digit showed skin lesions and every nail was corrupted.  I also pulled up my right pant leg and lowered the sock — two thirds of this calf and ankle are scarlet and scale-covered. 

He looked at all of this and said, “Talk to your dermatologist. He may have more recent information. But nothing I know would suggest you shouldn’t resume your use of Enbrel.”

 

Friday, February 21 — Day 24

I took my 25 mg dose of Enbrel. 

 

Sunday, February 23 — Day 26

It has been a pretty somber weekend.  In spite of the “good news” nature of Dr. H’s revelations last Thursday, there’s no getting around the pall cast by knowing, and sharing this knowledge with Clara, that I had cancer. 

I asked that she not share this with the children (and, hence, the grandchildren). I did share this via phone with my sister who lives near Seattle, but asked that she not share it with our parents, who are facing plenty of their own health issues as they approach eighty, and who live in Auburn, Washington. 

And I shared it with my boss and the company general manager at headquarters in Arlington, Virginia.  I felt compelled to share with them because of the impending daily periods of unavailability while I undertake radiation therapy. 

There is no such thing as a good cancer.  There is no such thing as a good report about “having had cancer,” even when you are nearly certain you don’t have it any longer.

The pall is there.  The stigma is there. 

Tomorrow I have a CT scan first thing in the morning and then, in the early afternoon, a consult with Dr. M, the radiation oncologist, who, I’m told, will go over the scan with me.

 

Monday, February 24 — Day 27

The CT scan was prefaced by drinking twenty-some ounces of something that lights up your insides when x-rayed.  I had to do this years ago, after my appendix burst but no one knew it and my doctors were scratching their heads to determine what was causing the pain and overwhelming white blood cell count. I was deathly sick at the time but vividly remember drinking the seemingly endless glass after glass of what tasted like liquefied chalk. Today the experience was much more pleasant. They have progressed considerably in flavoring the stuff and making its consistency less revolting.

Later, before I got in to see Dr. M, radiation technicians “tattooed me.” That is, they put me under a laser-guided machine then put four permanent dots on me: one on the groin, its companion just beneath my sternum — this was for the “north/south” axis — another on my right side and the last on my left side — for the “east/west” axis. Then they took more x-rays of me while I was lined up with the lasers.  These films, they told me, would be used by Dr. M to compute the radiation exposure settings for my therapy.

Dr. M is an interesting character.  An Argentinean by birth, with a modest Spanish accent and an appealing, paternal demeanor, I liked him immediately. First he wanted to see the damage. I dropped my drawers and he inspected my blackened apparatus and, above it, the incision.  He was not alarmed by the appearance of my genitals, but frowned and shook his head while perusing the incision. 

“Dr. H did this to you?” he asked.

I confirmed it.

“You need to tell Dr. H to sharpen his scalpel — or knife, or whatever it was he used.” 

Then he winked at me and told me to pull up my pants.

My CT scan that morning had generated about 80 images. These were lined up several images to a row, several rows to a sheet of film.  Dr. M called me to a seat near the wall-hung light “table” while he slammed these large films into the long clip that held them in place.

“These are cross section images of your hips and groin and abdomen,” Dr. M said. “This is your prostate and this is your bladder — which looks to have been quite full when these were taken. Were you uncomfortable? We’re concentrating on this area.”  With the back end of a ballpoint pen, he circled an area around the spine. “We’re looking for indications of fast-growing tissue in lymph nodes.  Anything like that will collect the dye you drank before the imaging and show up very white on the film.”

I scanned the half-dozen or so pages clamped to the wall and saw what I thought were dozens of white dots scattered throughout the images.

“Not everything that gets illuminated is what we’re looking for,” Dr. M added, as though reading my mind.  “For instance this.  This is plaque buildup in a major artery that feeds your legs. Not too serious.  Not the least unusual.”

He went on chatting as he scanned the rows of images. About midway through the set he started saying “very clean.” He must have said this a dozen times. Finally, as he removed the images from the wall and slid them back into the huge envelope, he said, “Very clean! I see absolutely nothing to be concerned about.

“But we still recommend the course of radiation.  Did Dr. H explain that to you?”

“I would like to hear your explanation,” I said.

“After a cancer like yours,” he said, “if nothing more is done than remove the tumor, which in your case was a testicle, two out of ten people are likely to have another cancer in five to ten years. If the patient receives a proper course of radiation therapy, that cuts that average to one out of ten.”

“Better odds,” I said.

Dr. M nodded. “Let me tell you about some of the potential side effects of the therapy....”

The side effects were all minor — nausea, diarrhea, headache, lethargy — and far from universally experienced.  Some people experienced reddening and irritability of the skin at the exposure site, but he also pointed out that people with psoriasis plaque at the exposure site often enjoy clearance during the course of the therapy. Dr. M added, “But it comes back rather quickly, I’m sorry to say,” and shrugged. 

“What about hair loss and the violent illness we hear about associated with cancer treatments?  The kind of side effects some say are worse than the disease?”

“Not with this therapy.  Not in your case,” he said.  “Most people tolerate this with no side effects at all. If you do have stomach or bowel problems they can be relieved with off-the-shelf medicines.”

After our consult, a technician talked to me for a few moments, then took me into the therapy area to meet the other technicians and to take my first look at the amazing device that would be radiating me. 

Then we went to “scheduling.”  When asked what time of day I would prefer, I said as early in the mornings as possible.  “Everyone says that,” the scheduler retorted.  “With as many patients as we have right now, that means we can get you in about 10 in the morning.”

“Great,” I said. 

Things will start on Tuesday, March 11 — two weeks and a day from today.

 

Thursday, March 6 — Day 37

I start my radiation therapy next Tuesday.  These days, with regard to the cancer I can’t help but feel confident. My confidence is helped by the fact that the gross bruising of my genitalia is subsiding.  The black is gone except for a small patch on the scrotum, and it fades visibly day-by-day.

The fluids Dr. H told me about, that made the scrotum look as though it still contained two testicles, has also subsided and I’m beginning to look like the 50% gelding I am.

A jocular co-worker of mine sent me an email that contained several hyperlinks to web sites promoting or discussing “prosthetic” testes for men who have had orchiectomies.  I was floored to learn there was such a thing. Some of these sites actually had “before” and “after” photos.  What was even more interesting were some of the on-line discussions on the subject. One fellow posted, “I wouldn’t get a prosthetic ball for all the tea in China.”  That one made me stop and think.  That expression is a metaphor for great wealth or compensation (China being a place where lots of tea is available). I asked myself how much compensation I would require to decide to sport a prosthetic testicle.  I figured the answer to that question would be, essentially, a measure of my indifference to the idea.  I concluded that, presuming the prosthetics are as safe as their manufacturers claim them to be, it wouldn’t take much to “pay me” to have one installed.  Maybe a quarter of a million dollars.  Maybe less.  I mean, what the heck? But I also decided that under no circumstances would I pay to have one.  Perhaps if I were single and twenty-five.  (And remember, orchiectomies as the consequence of testicular cancer are typically performed on men in their twenties and thirties. As a fifty-something I’m hardly within the target demographic for these devices.  On the other hand, maybe an older man like myself might be an effective promotion for some manufacturer seeking market expansion? Or maybe it’s hopeless. Maybe men like myself will never be interested in replacement testes.)

I’ve dispelled all my concern about Enbrel as a possible cause of my cancer. I’m going to think there was no association unless it happens again or discoveries by others suggest an association.  

No, it isn’t the cancer that has me down about Enbrel.

What I’m becoming upset about is the fact that I can see absolutely NO EFFECT from the drug.  It's the most expensive drug I've ever taken, and so far it's done nothing.  Meanwhile, I’ve stopped all systemics and am using only the topical corticosteroids, which stopped working well for me years ago.

With these past few doses I’ve gone over the three month mark on the Enbrel regimen. Granted, my “time off” during the cancer scare might have interfered with some normal cumulative effect of the drug, but still! The first thing Enbrel was supposed to do was quiet the psoriatic arthritis.  Here’s the rub on that:  After two years on methotrexate and a year (in between) on cyclosporine, my psoriatic arthritis had become a memory.  My cane had grown dusty in a corner.  My recollection of those terrible days when I almost could not drive, and typing hurt, were faded and growing hard to recall. Yes, there had been some twinges in my right knee a few months before I started Enbrel.  And this evidence suggests Enbrel did not inspire the return of my psoriatic arthritis.... But neither has it done anything to quell it.  Quite the contrary, it is as if I had stopped doing everything that was keeping the PA at bay and now it has returned in full rage. 

Acetaminophen has become like a dietary supplement for me. 

I have refused to visit the doctor for a knee aspiration (draining fluid off the knee) so I’m hobbling around with what looks like a three-quarter sized soccer ball in the middle of my right leg.  Going up and down the stairs to and from my attic office is an agony and a shame.  A shame because I forget the agony until I let that right foot drop down the first step and then squeal like a baby stuck with a diaper pin.

When I told myself — before this cancer business — that I would give Enbrel a six-month chance, I didn’t think about what all might come back if the Enbrel didn’t work.  This is the incorrigible, child-like optimist in me.  

Reality hits people like me very hard sometimes.

I thought about the plaque psoriasis, which had never cleared entirely on methotrexate and so, already I was contending with a few spots. But I had forgotten what it’s like to have a lesion encompass a calf. To stand before the mirror every morning and discover new eruptions.  To watch those eruptions grow in size until they eventually link up and become a continent of inflamed, itchy, seriously flaking skin. To feel the lesions growing on ones scalp, the constant itch intensifying like a migraine’s resolute insistence. To feel them thickening on the soles of ones feet and anticipate the pain it will soon make of walking, even standing.

I had forgotten how bad a flame time really can be.

I hope Dr. M is correct and my radiation therapy will drive at least some of this into remission.  Meanwhile, every Tuesday and Friday while I assemble the weird hypodermics that are a part of the Enbrel dosing system, I am tempted to use them as darts for my cork board.  But I don’t. I ram the $150-per-shot stuff into me with all the hope and faith of the haplessly gullible.

 

Tuesday, March 11 — Day 42

Today wasn’t actually my first day of radiation therapy. They used my time today to line me up under the machine and “take pictures” in accordance with Dr. M’s computations. Before my return tomorrow, these pictures will be checked by Dr. M to make sure the radiation exposure will be focused where he intended. 

Today I was in RADONCT (radiation oncology therapy) for about 30 minutes. The technicians attending me said once things get started in earnest — presumably tomorrow — I should be “in and out in less than 10 minutes.”

 

Wednesday, March 12 — Day 43

At RADONCT, to be undergoing therapy makes you are a different kind of patient.  For example, you have a separate lobby (waiting area) from the main office lobby. You do, however, have to traverse the latter to get to the former. This means like a doctor, or an office worker, or a really bold pharmaceutical company rep, you get to stride through the new patients and their anxious relatives on your way to therapy. I was counseled to wear “easy going” clothes. When I asked if sweat pants, peasant shirts and loafers qualified and was told they did, it meant I’d have to do nothing special but show up (these clothes are my typical daily attire). Of course this meant I didn’t look like a doctor or an office worker or a pharmaceutical rep to the anxious lot in the outer lobby when I strode through.  I looked, maybe, like somebody’s retired relative — or, perhaps, like a patient undergoing cancer treatment.

Once inside and in our own waiting area, we all look more-or-less alike, no matter what we wear.  We all just look like varying degrees of desperation and anxiety wearing glued-on smiles.

The women who are getting radiation therapy for breast cancer wear smocks above the waist provided by RADONCT.  These are colorful, poncho-like contraptions that these women change into after they arrive, and which make them look like wilted flowers. Which might not contrast with how they feel. Today there were two of these blossoms waiting when I arrived. Also, there was a rail-thin black man with a compassionate face. He was dressed like me, but more stylishly. We both wore sweat pants, but he wore a matching jersey and jacket. Though I’m sure the garment was his size, he was so thin the fabric hung like it would on wire hangers. 

One of the RADONCT smock-wearers sitting near me in the small patient-waiting area pointed to a plate on the coffee table around which our few chairs were arranged.  “Mrs. S brought those oatmeal cookies this morning.  Feel free.” 

The oatmeal cookie was delicious. 

Almost true to their assertion, the therapists had me in and out of there in under twenty minutes.

 

Thursday, March 13 — Day 44 

While I was getting zapped today, my seventh grandchild was born.  Kelsey Chloe, a beautiful, healthy baby girl. I stopped home long enough to get the camera, then on to the hospital to visit mother and daughter.

I cannot feel what the radiation does to me, but the joy in today’s event is a healing influence — I am sure. 

 

Monday, March 24 — Day 55

Periodically during this course of radiation treatments I am to be weighed and consulted by Dr. M.  Today was one of those days.  However, Dr. M is vacationing in Argentina this week so his colleague, Dr. D (a Ms), filled in. 

Impulsively, I asked Dr. D how radiation kills cancer. We had quite a discussion.  Here’s part of what she told me:

The radiation kills fast growing cells by breaking apart the DNA inside them. A single DNA structure contains two parallel strands of genetic material, latticed together by cross strands in a spiral staircase-like effect.  Sometimes the radiation breaks both of these strands, in which case the cell dies right away.  In other cases the radiation breaks only one of the two strands, in which case the cell does not die until it attempts to reproduce — to split into two whole cells. 

She said that at the end of a course of radiation on an inoperable tumor, the tumor may be reduced in size but not altogether gone, yet the therapy is still considered a success.  By the end of radiation treatment, the tumor has shrunk because some portion of its cells were killed outright; but the tumor still exists in part because some cells are only waiting to die.  As those cells try to multiply and then die the tumor will continue to shrink.  In the best cases the tumor will go away altogether.

Now my case is different because they are not radiating an inoperable tumor. They are generally radiating the lymph network area in my groin and lower abdomen so that any cells that grow at the rate of cancer cells will be destroyed.  Obviously, from my CT scan and blood work, no other cancerous tumors are inside me, but tumors grow from a malignant cell that divides and clones itself exponentially.  Those errant cells would not show up as tumors — yet.

What I failed to ask Dr. D after this was what other cells does the radiation kill? If radiation therapy killed only cancer cells, I rather doubt such pains would be taken to limit exposure to it. “Fast growing” cells include, I know, cells that manufacture hair, but my pubic hair has been unaffected by the radiation so far. Theremust be other types of cells, cells we need to stay healthy, that also succumb to the radiation.

 

Tuesday, April 1 — Day 63 

The one ill consequence of my radiation therapy has been a trip that it precluded and which would have begun today. Since late February I have been working on scripts for the General Sessions of a major conference starting this week in Nashville. I have written the general session scripts for this client’s annual conference for three years.  The culmination of the job is always my trip to the conference itself, where last minute rewriting occurs, where I meet and rehearse with the hosts and speakers, where I work with the prompter operator to convert the scripts to prompter copy and, of course, where I cavort with the rest of the staff that puts this annual shindig together.

The conference begins this coming Thursday and, had I not been in the final days of this radiation therapy, today I would have driven down to Nashville for our final on-location preparations.  But I learned when I started this therapy that a week-long interruption was not a good thing.  The insinuation was that, if I was serious about the treatment, I would change my plans regarding this conference.

Fortunately, I was able to work it out.  Another writer in the company agreed to handle the on-location tasks.  I would see the scripts through all reviews and rewrites up to show week. The client agreed.  So, I’ve done all the work I would normally do, but now I must sit here while someone else brings it to fruition.

I suppose that is a small price to pay — and the only reasonable action under the circumstances — but I’m allowing myself this day to pout. 

 

Monday, April 7 — Day 69

Tomorrow is my last day of radiation therapy.  Assuming there are no delayed side effects, I can say it has been “a breeze.” I thoroughly understand, now, why radiation therapy is so much more desired by cancer patients than chemotherapy.  The strong drugs that comprise the chemotherapy arsenal typically make a patient suffer incomparably more than the side effects of radiation therapy.

One of the ladies — she’s in her late sixties, I think — who my sessions have been scheduled close to, is undergoing both chemo and radiation. Over the past 20 days I’ve watched her sometimes shocking ups and downs.  One day she’ll be managing everything quite well, smiling and chatting with the rest of us, the next day she’ll be wheelchair bound and not at all communicative. On these bad days I can sense her husband trying to stand in for her with the rest of us; he tries to smile and chat for her, which makes it even sadder, I think.

Tuesday, April 8 — Day 70

Today, my last day of radiation therapy, I brought two dozen doughnuts for the staff and patients.  It is, you see, a sort of custom that’s been going on here at RADONCT for who knows how many generations of patients.  The day a patient graduates — and we can use that verb because we receive a something like a diploma! — the graduate-patient brings a culinary treat. Many of the women prepare these themselves. I’ve enjoyed cookies of all kinds, muffins, cupcakes and homemade candy, all prepared by ladies who graduated before me.

It’s true that as I drove away from RADONCT today I had a little lump in my throat.  Because of relief, I guess, but also sadness for the new friends I probably would not see again.  And sadness for some of my co-patients who, in moments of quiet conversation, sometimes mentioned this wasn’t their first course of radiation ... and they weren’t too optimistic about the outcome.  And sadness for the new crop of patients in the outer lobby, which I walked through each day of my therapy, many of them wearing fearful expressions.... And the lump contained no little bit of respect for the team of professionals — overwhelmingly young ladies — who administered my therapy these past twenty days.  Most of them mothers who brought those maternal instincts unabashedly into play on the job.  And I say now, with no shame, that it was good to be mothered through this.

I hope, as I’m sure every RADONCT patient hopes, that I won’t ever have to return.  But I also imagine, as I’m sure other cancer patients imagine, how bad it was to have this disease before places like RADONCT existed. I’m aware of the irony in my saying that. For all practical purposes, I didn’t suffer at all. My testicular cancer appeared as a non-painful swollen organ; my recuperation after its removal was uneventful (black genitals not withstanding) and nearly pain-free; my course of radiation therapy went smoothly and without side-effects.  

My cancer was a ghost demon that never hurt me.

I know how lucky I have been.

 

Thursday, April 10 — Day 72

By all rights this story should have ended last Tuesday, April 8. But there is the matter of Enbrel, which I feel compelled to wrap up, too.

I’ve read an article that said some patients who weren’t responding quickly to Enbrel were switched to a double dose (50 mgs twice weekly instead of 25 mgs twice weekly) after which they responded quickly and positively. Today I called Ms. A at my derm’s office and broached the possibility with her.  Serendipitously, tomorrow night she is attending a manufacturer’s presentation about Enbrel.  She said she would raise the question there. 

I think, if I am permitted, I will try the double-dosing technique before I give up entirely on Enbrel.

And, by the way, my navel lesions remain clear after the radiation therapy. All other lesions are flaming. And my right knee has become my bitter enemy.

 

Wednesday, April 16 — Day 78

Ms. A called back today and said two things.  Once again, no known association between Enbrel and testicular cancer has been identified or suggested.  And yes, the fact that I’ve had no positive outcome after three months of regular Enbrel dosing — compounded by the fact that I’m actually getting worse — suggests a double dose be commenced and continued until an acceptable degree of clearing is obtained.

Ms. A stipulated, however, that I should discuss this option with my other doctors and make sure they see no reason why a double dose regimen should not happen.

 

Friday, April 18 — Day 80

Dr. V (GP) and Dr. H (urologist) have both given the thumbs up on my double-dose Enbrel therapy.  I called Ms. A today and relayed this to her.  She said she would call in the prescription to my pharmacy.

Dr. V made an interesting comment.  He said, "Given the strikes you have against you — diabetes, now a bout with cancer — Enbrel should be a lot safer for you than methotrexate or cyclosporine." 

   

Friday, April 25 — Day 87

The pharmacy ran into a snag trying to get twice my previous dose of Enbrel. Seems my insurance company has a per-prescription limit of $2,000 and a month’s supply (28 days) of Enbrel at 50 mgs twice weekly comes to more than that.

However, Ms. J, the pharmacist, thinks she might have a work-around. She is going to change the 25 mg twice weekly prescription to a 14 day supply instead of a 28 day supply. If they swallow this, and refill every 14 days, the only drawback will be an additional $10 co-pay for me. That’s $20 rather than $10 for a $2,400 prescription. It did not require much thought.

 

Tuesday, April 29 — Day 91

I took my first double dose of Enbrel today.  What a hassle.  Mixing medicine for two subcutaneous hypodermics. One shot in each love handle. 

The one thought that ran through my mind as I performed the mixing and self-injecting: If everybody is wrong and two shots a week brought on my testicular cancer.  What might four shots a week bring on?

I’m really not afraid.  I’m just trying to be prepared for anything.  –Ed

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