The Cancer File

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The Cancer Diary-Good Luck

Fourteenth of fourteen columns

Cancer is a unique experience in one’s life. Recovering from it is for some uncomfortable, and for others it is almost intolerable; surviving it and its body-punishing treatments is a gift that too few are able to share.

About one hundred of us celebrated our survival during a recent get-together at the Sheraton Ferncroft Resort in Danvers, Massachusetts at the invitation of the North Shore Medical Center (NSMC).

Several local and national groups sponsored the affair, and a number of the speakers came from the staff of the cancer clinic that is operated by NSMC on Centennial Drive, Peabody, which was the site of my course of radiation treatments in 2003.

The conference was professionally staged. Facilities offered by the Ferncroft are well suited for such occasions; the packet of literature made available to each person was concise and useful; the staff that registered and otherwise guided the people could not have been more helpful or courteous.

Visitors were greeted with hot coffee and mounds of fruit and pastry; lunch was ample and well prepared; attractive snacks were available between lecture sessions.

The circumstances, setting and organization of the meeting are set forth in such detail here because they accurately characterize how this segment of the health-care industry treats its patients, including this one, which is something I want you, dear reader, to know.

From the day my cancer was diagnosed through the day of my final radiation treatment, I was handled with more care and understanding than I have ever before experienced in any other setting during my lifetime.

Keep that in mind in case you someday are required to follow in my footsteps. People can and do make a difference.

I am (or was) a businessman. Being cost conscious is instinctive. As I stood in the living room of the hotel, coffee and croissant in hand, my eyes swept the surroundings – my mental cash register started to tabulate.

Then I saw the lunch, the meeting rooms and the personnel involved. I pushed my private “total” key and came up with a huge sum of money.

Why? Why spend it? What’s the payback?

I couldn’t see any. Not in a monetary sense. But I did see a lot of smiling people.

And all day long I saw a string of speakers (mostly professionals) who were there because they were interested in helping me, and people like me, to live the rest of our lives hopefully, realistically and productively.

Remarkable! In this day and age of “I’m for me?”

Remarkable!

Here on the North Shore of Massachusetts we are blessed to have high quality health-care organizations -- clinics, treatment centers and hospitals -- concentrated in our midst.

My admiration and my thanks go out to them. And my classmates at the seminar, I’m certain, felt the same way.

Incidentally, one priceless moment occurred during a break that I must share with you. It went something like this:

“You’re Robert Kelly from the Salem News?”

“Yes.” I held out my hand. “Glad to meet you.”

“Hello,” he said. “I hate your column.”

Priceless! A left-winger with a sense of humor.

So ends the saga of the Kelly cancer. It was written in the hope that some guy out there might some day benefit from some section of this string of columns. It’s the second time they’ve been published and I know, from personal experience, that they have helped someone who, like me, got that damn phone call: “You’ve got cancer.”

I was lucky. I hope you will be lucky too.

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The Cancer Diary-To Life

THE CANCER DIARY –TO LIFE!

Thirteenth of fourteen columns

“Your PSA count is zero.”

Those five words are the most important ones I’ve heard since I was one minute old and my subconscious ear heard a young woman say: “His name is going to be Robert.”

In both cases the world was notified that I was alive and would most likely continue to be for some time to come.

The PSA count is the result of a blood test taken for the purpose of discovering the probable existence of cancer in the prostate gland, a dangerous, life-threatening condition.

I’ve taken PSA tests for years, and it paid off in the winter of 2002. My count was high and growing, a sign of danger.

“It’s time to see an Urologist, “Dr. Mahesh Wadhwa said.

And that’s how I met Dr. Anthony Filoso, the man who quarterbacked me through the appropriate tests and the decision making process.

My relationship with my quarterback was super-productive because of our compatible temperaments. I take my medicine straight; he delivers unvarnished facts and opinions in clear, concise and understandable language.

Filoso sent me to the North Shore Cancer Center in Peabody’s Industrial Park.

Three doctors examined me independently and, in a final interview, I heard their unified opinion.

Radiation was the prescribed treatment.

Radiation!

A scary word that describes the stuff that nurses run out of the room to avoid when we get X-rayed.

I didn’t accept the recommendation at face value, however impressive the source. I debated with my quarterback -- vigorously.

How about seeds (Your cancer’s too advanced)? Surgery (You’re too old)? Do nothing (It’s too dangerous)?

He shot my alternatives down one by one, and then added one of his own -- a regime of chemotherapy that would make radiation treatments more effective.

Patients should debate these tough choices with their doctors, and they should have doctors like mine who understand this.

But prolonged debate can amounts to indecision wearing a different hat. Facts must be faced. Eventually, I bowed to superior knowledge and fully cooperated at all stages of the treatment.

It paid off.

We all contemplate death from time to time. I’ve watched two parents take their final breaths.

But until we feel for the first time a hint of the breeze that will one day transport our souls to a different place, death seems distant and elusive.

Now, I’ve felt the touch on my shoulder. Because of it I’ll enjoy my remaining time that much more.

Thank you, Dr. Mahesh Wadhwa (the coach), Dr. Anthony Filoso (the quarterback) and Dr. Eric Weber (the Radiologist).

And, most importantly, thank you God for these thy gifts.

I raise my glass.

To life!

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The Cancer Diary-No More Chemo

THE CANCER DIARY-NO MORE CHEMO 

Twelfth of fourteen columns

Will he stop chemotherapy today? Will he send me to the lab for a PSA test (a blood test that tracks the health of the prostate gland)?

These were the questions that recently occupied my mind as I waited for the doctor to appear, and as I reviewed the events that had brought me, still alive and kicking, to this point.

It all began in November 2002 when my personal physician informed me that my PSA count was too high. An appointment with an Oncologist soon followed and, in his office, a biopsy was taken.

The results were positive – I had an advanced cancer in the prostate gland that was aggressive.

Bad news.

The oncologist laid out my theoretical options. He expressed a preference for radiation therapy but, at the same time, suggested I visit the North Shore Medical Center (NSMC) in Peabody, Massachusetts to get a second opinion, an idea I readily accepted.

Three different specialists comprehensively interviewed me at the clinic. Soon after for reasons previously reported in 11 columns on the subject, the recommendation of my oncologist (radiation) was accepted by all.

Radiation treatments ended in July 2003.

Thirty days later I reported back to the clinic for final examination, consultation and release to my oncologist for follow up.

Chemotherapy continued until my most recent visit.

My hopes were realized – the doctor has stopped the chemotherapy and sent me to the lab for a PSA test the result of which will serve as a baseline against which the result of the same test six months hence will be measured.

Because of the positive impact of radiation and chemical therapies, my current PSA count should be low, but it will not be definitive -- the passing positive impact of chemotherapy has yet to clear my body.

Six months from now the PSA reading will reflect a simple truth: therapy vs. cancer.

If I win, the count will be low. If I lose …?

This has been a unique experience for me that has yielded dozens of impressions, a few of which I have space to share with you.

The medical profession has made great strides in the treatment of cancer. I, and others like me, have a chance to be cured today by methods that, in the same form, hardly existed a decade ago.

And the future looks even rosier.

I can’t think of anything my local oncologist could do for me that he hasn’t done: I can’t imagine clinic services more professional than those that I received at the cancer clinic.

Liberals seeking a national health care system have unjustly smirched the reputation of health care organizations (HMOs).

During this 18-month travail my treatments cost more than $26 thousand. No unreasonable question was ever asked.

This is not the first time my carrier has supported me, and my wife, through difficult medical times. And it needs to be said that HMOs perform a valuable and necessary service to Americans, and to the American health system.

I am pleased I decided to write this series of columns. They have been helpful to others; writing them has been helpful to me.

The next column will report the results of the first definitive PSA test. Let’s hope it’s good news.

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The Cancer Diary-Treatments Over

THE CANCER DIARY

Eleventh of fourteen columns

My treatments at the North Shore Cancer Center in Peabody’s Centennial Park ended about a month ago and I recently had a follow-up visit at the clinic with my supervising doctor.

The meeting was uneventful from my vantage point, but it was an important one for the clinic.

Treating most forms of cancer is far from being a finished science. New techniques and the methods of applying them are being constantly developed and the progress of patients is persistently and carefully audited and recorded.

How do you feel? How about this side effect or that one, and to what extent did you experience it?

These are typical of the questions asked. And it isn’t just an exercise in public relations. It is research.

Answers are presumably collated at a later time and compared with responses from other patients who experienced different modes of treatment. And the information so gathered will in the future make the best treatment for a given cancer an easier, more obvious choice than it is today.

For example, some doctors believe that cancers for which surgery has been the treatment of preference can be treated today by radiation with equal or better effectiveness in terms of cure rates and side effects.

And the data to prove their case are steadily growing.

That is good news for tomorrow’s patients because major surgery is always, by itself, a risky business.

My appointment ended with a blood test to determine my post-treatment PSA count. And A few days later the clinic called and reported the results – a 0.0 reading.

Prior to the hormonal therapy and the round of radiation treatments, the count had been 7.0.

Is this whoopee time? Is it time to celebrate? Am I cured?

I’d love to say yes to both questions but reality forbids it. The news is good, but it isn’t conclusive.

There are three forces at work inside of me, each of which is pulling the PSA count up, or down:

1) The cancer: To the extent that it’s still active, it pushes the count up.

2) Zoladex, the hormone that is shot into my belly every three months, pushes the count down.

3) The radiation regime, by itself, tends to lower the PSA count.

Under these circumstances, what does a PSA count mean?

Not much.

It’s better than a high count, but it is not yet an indication of success or failure.

A few days after my clinic visit, I returned to my urologist. His physical examination was more thorough.

He tells me that I will be kept on the hormone for another year – three or four more shots.

This means that the PSA confusion will continue for at least that period of time.

When the hormone is finally withdrawn, its misleading influence that pulls the PSA count down will be gradually removed; the residual cancer (if any) and the residual effect of the radiation treatments will remain as active, but not very powerful factors.

If the PSA count does not rise above 1.5 or so after the influence of the hormone has been removed, it will be reasonable to say that the treatment program has been successful and that the probability of a relapse will be minimal.

But if the count begins to rise again …????

Have I changed much since the treatments began?

Not much, but two modest differences in my daily behavior would be noticeable to those who know me well: I pray more; I hold my bride’s hand more.

Facing death has a way of clarifying one’s sense of what is, and what is not, important.

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The Cancer Diary-Treatment Ends

Tenth of fourteen columns

Patience is a bitter plant but it has sweet fruit – A German Proverb

The eighth inning of my long game with cancer was completed recently.

It hasn’t been fun to appear at The North Shore Cancer Center in Peabody’s Centennial Park early every weekday to get, in 40 visits, 280 beams of something that everybody with common sense hides from.

Those of us with unscientific backgrounds are compelled to wonder: How come this is so good for me and, at the same time, so bad for them?

The answer of course is this: It isn’t good for me either, but the harm that it causes to me is less dangerous than the untreated disease that it attacks.

A prostatectomy (surgery) begins and ends in a day; seed therapy is over in a few hours. Both approaches to prostate cancer therapy provoke the normal defensive reactions -- but patience is not tested.

External radiation, however, is a slow, plodding process that is repeated day after day for (in my case) eight weeks.  Enduring it is a supreme test of patience.

And at the end of it, the success or failure of the treatment is not definitely known.

It will take weeks, maybe months, before the urologist will buy me a celebratory lunch or, ominously, will send me to another (the last) specialist.

Two things are for sure: I will not repeat radiation therapy (the body has had enough); surgery as an option is out the window.

In short, if radiation doesn’t work, my working relationship with the Maker of miracles will be tested and I’ll be reviewing my affairs with my lawyer.

The upcoming ninth inning is the waiting period.

First, I get a three-week rest from radiation (it de-energizes most patients) then I return to the clinic for a final exam.

This, I suspect, is basically a formality to check that my nose, or some other uninvolved body part, wasn’t by mistake beamed out of existence.

After this I’ll be released to my urologist who will take me through his test routines.

From previous discussions with him, I assume I’ll continue to get hormone shots for at least a year, and I expect I’ll get PSA readings every three months or so to see how the big C is behaving.

The cliché is quite true about finding a silver lining in the most troubling situations. In this case, for me it was the people I met from the time I entered the cancer Olympics.

My urologist is competent and deals direct from the shoulder – my kind of guy.

His staff has been unfailingly courteous and capable.

Doctors and nurses at the clinic are, in a word, impressive. My questions – and there were many – were answered by them thoughtfully and completely.

Therapists who handled me day after day could not have been more skillful or attentive.

Finally, patients in the radiation waiting room were an inspiration. Despite their illness, their humor, courage and support are what I’ll remember about them.

The next column in this series will be published when, I hope, I can definitively report that my bitter plant has produced sweet fruit.

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The Cancer Diary-Interim Report

Ninth of fourteen columns

This is the middle of the eighth inning.

So far, no complaints.

Half of the treatments are behind me and I’m in a position to pass on more information about what happens within Frankenstein’s radiation chamber, and – more importantly to some -- what goes on inside the body of one who receives seven beams of radiation per day, released from seven different angles (while, disturbingly, those who supervise the treatment run for cover before the bombardment begins).

Something powerful is going on in that room and taking the radiation barrage without protest is an act of will that is made possible by the trust one develops in the system -- the doctors and the therapists who operate it – and by respect for the disease within me.

The trust is well placed.

I’ve previously explained the use of the ID card that is issued to each patient. Inserting it into a slot located in the control room brings the patient’s picture and personal information to the computer screen. At that point, the patient usually retires to Frankenstein’s chamber for treatment.

But if one lingers for a few seconds the next critical aspect of the check-in procedure becomes visible to the alert, inquisitive patient.

The ID card also activates the patient’s computer file, and the flick of a key by the therapist brings to the screen a picture of the area to be treated, angles of treatment and the required position of the body when treatments are delivered.

At that point, the computer and the radiation machine are in contact and the only missing ingredient is the patient’s body in its prescribed position.

The blocking session that precedes actual treatments was reviewed in an earlier column. When the patient leaves it, he carries tattoos on his hips and on his belly.

During the setup for actual treatments, laser beams on each side of the room are activated and the patient’s body is shifted on the table until the lasers line up with the tattoo marks on the hips -- the overhead eye does the same job with the tattoo on the belly.

When everything is in alignment, the body is theoretically in the position that the computer program demands.

Then therapists go to the control room and activate the machine. And here’s the kicker – if the body isn’t lined up properly, the radiation machine will not operate.

Now that’s a system that breeds confidence in the people who designed it, and those who supervise and operate it.

Side effects?

The disposal systems of my body continue to operate satisfactorily; there has been no marked change in my sleeping habits.

Appetite?

I’ll carry a sandwich to the grave -- I have not changed my diet, but I play with it here and there if I sense an onslaught of side effects.

I work every day on different writing projects; I sense that my energy has dropped off a bit.

The hormone injection gives me occasional hot flashes.

But overall?

No complaints.

The eighth inning will end in late July. At that time I’ll summarize the 40 treatments and give the particulars of what I’ll face in the last inning of this game that, sometimes, appears to have no end.

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The Cancer Diary-Radiation

Eighth of fourteen columns

The security process at the clinic is impressive. An identification card is issued and it must be presented to the technician before one can be admitted to the radiation room.

When the ID-card is inserted by the technician into a slot that is connected to a computer, the patient’s picture appears on its screen – only then may he may enter Frankenstein’s parlor.

I wore shorts instead of trousers this time and escaped the requirement of doffing the pants and wearing the ever-stylish hospital Johnny.

On the table, I unzipped, dropped my shorts to the groin level and exposed my abdomen to what was to come; I slipped my legs into the slots that kept my body in a constant position while the blocking process took place.

The machine used in the radiation room, I immediately noticed, is different from the one used in simulation.

Instead of a huge donut hole through which the body is passed during simulation, I was this time looking up at a round, black and silent eye that, I was soon to learn, could be moved to the right and to the left so that my body would be exposed to it from every possible angle, even underneath.

The idea behind blocking (which is held in a different room with the patient lying on a table with a different configuration) is to line the body up with the tattoo marks that were placed on my abdomen during simulation.

Once this was perfectly accomplished, technicians awakened the overhead eye; they left the room while the machine purred and took picture after picture of my body, from the left, the right and underneath.

The technicians returned after each picture, reloaded the film and then they raced again to the safety of an outside room as the super-powerful rays penetrated my body.

The information gleaned from blocking is fed into a computer, which will thereafter guide the same machine to bombard my body with beams of radiation.

The entire procedure took less that a half-hour; it was painless.

Radiation patients at the Peabody clinic appear at the same time, five days a week, until the series of 40 treatments is complete.

Dutifully, I obeyed this rule after first going to my doctor’s office for another shot in the belly of the hormone, Zoladex.

I must admit that this experience is somewhat unsettling from a psychological point of view. For example, a shot in the arm can be comfortably described as a “treatment.” On the other hand, when someone plunges a sharp object into your belly, the word “attack” seems more appropriate.

The side effects associated with Zoladex have so far, in my case, been tolerable (hot flashes). My urologist tells me I will get these shots every three months for as much as a year – maybe, three years.

My first radiation treatment, held in the same room, was administered by the same people who made the blocking tests. The process was the same, but shorter.

Mixed in with the treatment itself was a repetition of the picture-taking procedure.

I felt nothing during or after treatment.

So far, so good.

This ends the blow-by-blow account of my journey to the radiation room because I don’t expect future treatments to be much different from the first one.

If I experience side effects later on, I’ll explain them in a column; at the end of the radiation cycle, I’ll write a review.

And up the line somewhere, I’ll report the success or the failure of this attempt to kill one more cancer – my cancer.

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The Cancer Diary-The Pre-treatment Process

Seventh of fourteen columns

The diagnosis is complete. There is no profit in grieving over lost treatment options; focus must be on how best to negotiate the road ahead.

Three-dimensional conformal therapy is the standard approach to radiation treatment.

Proton and high-density therapies are beyond experimental, but they are not commonly available. These latter options will be more developed and more accessible to future patients than they are to me.

The standard approach, according to my research, has been applied with consistent success. I brought that view to my urologist’s office on the day following the clinic examination.

He agreed.

Highly trained technicians under the supervision of a radiologist will apply treatments, which will take place at the cancer clinic located in Peabody’s Industrial Park.

A pre-treatment process comes first.

A technician greeted me, led me to a conference room, reviewed my file and explained possible side effects and remedies after which she led me to the treatment area.

The routine began: Into the dressing room, off with the pants, on with the hospital Johnny and into Dr. Frankenstein’s chamber.

A flat narrow table awaits, perhaps eight-feet long, at the open mouth of the huge CT Simulator machine.

A confident, obviously experienced technician made me comfortable on the table and discretely placed a sheet over my lower body; I dropped my underwear sufficiently to expose my abdomen.

She then placed a device around my lower legs effectively locking me into position (It is of paramount importance that one lie completely still).

The idea of the procedure is to map out the precise location of the prostate and the cancer. A computer memorizes these things as my body moves backwards into the mouth of the machine so that its eye can see what it needs to see.

One’s body is not totally enclosed by the inner tube of the CT Simulator and a feeling of claustrophobia is, at best, fleeting. I dozed off while my body was being studied.

There is no pain involved; I was reasonably comfortable throughout the procedure.

The last step is the placement of tiny tattoos on one’s body that will be used to guide the computer when actual radiation treatments begin.

In less than a half hour I was ready to go to lunch with my bride. Before doing so it was explained to me that the clinic had three machines. Patients are scheduled in 12-minute intervals.

I was given only two time options (a gruesome and frightening reminder of how busy they are treating cancer) and I chose one that interfered least with my routines.

Next comes the blocking procedure during which my body will again be studied; a physician will lay out the precise areas of treatment, plus those that are to be shielded against radiation.

That will be, I believe, the last step before actual radiation treatments begin.

In the next column I’ll take you through the blocking procedure and the first of what ultimately will be 40 radiation treatments, seven shots per treatment willingly taken – 280 shots of electromagnetic waves of energy that one would normally avoid like a plague.

Having cancer, reading about it and learning what it can do to an otherwise healthy human being are the circumstances that make the acceptance of such a treatment regime appear reasonable.

I don’t look forward to being bombarded with radiation. Who would? But like the rest of you, my life has been spotted with “must-be-done” tasks.

So what’s new?

Like a good soldier, I’ll lower my head and take my lumps.

Brave? No. Realistic!

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The Cancer File-One Option Remains

Sixth of fourteen columns

A tussle with cancer is a nine-inning game. I haven’t done so well during the first six innings.

The box score goes something like this: First inning, high PSA; second, bad biopsy; third, high Gleason count; fourth, high staging; fifth, options limited; sixth, experts are needed for guidance.

But the first six innings, the warm up period during which one develops a feel for the strength of the opponent, and determines the will to resist and to win, are never the critical ones.

The rubber hits the road in the last three innings – only the final score is remembered.

The selection of the treatment, the treatment itself and, finally, the follow-up tests are the three innings that lie ahead.

A sense of inevitability and calm has overtaken me as I move step-by-step toward the cancer clinic and the preferred treatment option that I expect will emerge from its process.

The experts, I assume, will rule out surgery because of age, and chemotherapy as being too drastic for a cancer like mine. I hope they will recommend internal radiation over external – that, at least, they will keep that option alive.

Why? Because internal radiation is a one-day treatment that is (short-term) more powerful and more precise than the others and, when expertly performed, it can result in less damage to healthy tissue and fewer side effects of consequence.

External therapy is lengthy and is sometimes postponed during the treatment cycle while the patient recovers from side effects.

Faced with a choice between the two, who wouldn’t prefer the former to the latter?

Prior to the meeting I filled out an exhaustive questionnaire dealing with my medical history – my files had been forwarded to the clinic. No other pre-preparation was required. The total process within the clinic took about three hours.

A word of advice: When dealing with experts, never leave your head at home. Engage yourself in the thinking process; ask questions; expect answers -- the good ones appreciate it; avoid the others.

I met with three doctors for 30 minutes each. They were experts in surgery, radiation and medicine.

Two of them examined me digitally; all of them examined me cursorily and each one of them questioned me intensely.

I gave each doctor two pages of specific questions dealing with my concerns, a very constructive action that saved time and focused conversation.

My wife was with me throughout, a deliberate choice that I recommend if your spouse has the belly for it. This no time for macho – believe me, sharing the experience with someone you trust helps, and its eliminates the need for post-examination questions.

After the interviews (90 minutes), the doctors met with each other for 45 minutes to discuss my case.

Then one of them called me from the waiting room and, in the final minutes, delivered and explained the consensus opinion, and she answered my final questions.

This was the seventh inning. I lost it too. Much to my regret, my cancer is too aggressive to be treated with internal radiation. And I am too old to risk the surgery that would otherwise be recommended.

All of the options except external radiation have been eliminated as inadequate or non-applicable in my case.

No final decision was made (or expected) at the clinic. But it seems inevitable that when I meet with my urologist he will agree that I should undergo the 40-day treatment of external radiation as soon as possible.

In the next column, the eighth inning, I will explain in more detail the long road that lies ahead.

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