Prostate Cancer Journal


Entry 1: May 14, 2009

Today I Take the Test

Or maybe it is more accurate to say that today the test takes me.

This afternoon I will be heading over to my doctor’s office, a urological specialist, and have a transrectal ultrasound-guided prostate biopsy. This test will be used to determine whether my elevated PSA blood test results are indicative of prostate cancer or infection or something else altogether.

Since getting the report of my PSA (prostate specific antigen) levels ten days ago, I have only talked about this with my wife, pastor, and three trusted friends. Those who know me may be surprised that I told that many others about the impending biopsy. When it comes to such personal details, I tend to be intensely uncommunicative, a New England-ish “It’s my business, and only my business” attitude–although I have never lived in New England. I have decided to leave my comfort zone and journal about this experience for two main reasons. First, as a coping mechanism to help give the swirl of emotions some expression and a place to “live” besides in my gut. And second, the majority of my male friends are in their forties and fifties (the women are never older than twenty nine), and if the sharing of my journey–wherever it may lead–gets even one of them into the doctor to begin getting an annual PSA, than this breach in my personal space will be very much worth it. Well, maybe a third reason: wives and mothers get your forty-year-old husband or son to the doctor annually–the years of health and life you will give them is worth the nagging!

My father died on February 3, 1993 at the age of 66. He died from the complications begun by prostate cancer. When Dad was diagnosed in 1989 or 1990 his cancer was already well advanced and had already advanced into his lymph nodes. If prostate cancer is detected and stopped before the lymph nodes are involved, there is every chance that it can be “cured”. However, from everything I have read, once it moves from prostate to the lymph nodes a nearly unstoppable progression has begun that will lead then to bone cancer and death. Prostate cancer is slow-growing. That is one of the characteristics that gives those who are diagnosed early great hope. It also means that Dad could have had his prostate cancer for eight or ten years before the back aches and the blood in his urine finally sent the stubborn man to the doctor.

Much like the plumbing in the walls of our homes, us men don’t think about our plumbing until there is a problem. The prospect of the doctor inserting a finger where the sun don’t shine to palpitate the prostate through the wall of the rectum is generally less uncomfortable than it sounds, nevertheless it makes most men anxious and, I suspect, most men would certainly choose to avoid the whole issue if offered, say, a beer instead. Really. Every man age forty and up should have a digital rectal examination as part of his annual physical examination. At age fifty the blood test for PSA should be done annually as well. Yes, guys, preventative maintenance. We understand preventative maintenance is necessary for our cars, why is it so hard for us to translate that truth to our own bodies?

If there is a history of prostate cancer in the family, as there is in mine, the PSA testing should begin at age forty. For most men, a PSA below 4.0 is seen as being acceptable. Because of my family history, my doctor wanted to see a PSA level below 2.5. Truth be told I have been less than regular about my annual exams and my last PSA was when I was forty-seven. So now, the 4.8 result from my PSA has prompted the next step: a biopsy of my prostate.

After Dad was diagnosed, and again after he died, I did some reading about prostate cancer. Knowing the details of the disease didn’t help me cope with the loss of my father, it just gave me more information. Well, it is sixteen years later and thanks to the web information is much easier to come by. And for the ten days since I heard the news and that I was scheduled for a transrectal untrasound-guided prostate biopsy, I have been overloading on information. Intellectually I am as ready as one can be for the procedure. Oh that the knowledge would ease my unease and anxiety. Quite simply, I want to back myself into a corner and tell everyone to just leave my butt alone. Okay, that had to be said, but I guess I have to push on.

Today is an exploration to get answers. What we know is my prostate is slightly enlarged and my PSA level has put my doctor on alert. I have no other symptoms. The ultrasound wand will go in, and working through the wall of the rectum (!) the biopsy needle gun will take ten to twelve core samples from the prostate. These will be sent to a lab for examination and interpretation. The likelihood of cancer will be determined using a Gleason scale. If cancerous cells are found, the technicians and doctors will assess this according to a scale to better decide how the treatment will be handled.

Time to get ready. I have picked up from the pharmacy an interestingly shaped bottle from Fleet that is supposed to make the work site a bit cleaner. I have my antibiotics that I will start taking two hours before the procedure, and I know as much as I can know about what to expect. If my resolve to journal holds, I will post later about the procedure.

Entry 2: May 16, 2009

You’re Going to Do What?

A Bit More Waiting

You can read a lot about the procedure that is technically known as transrectal ultrasound-guided prostate biopsy on WebMD and the many good sites that have written about men’s health and prostate cancer. Most of them will say that it “doesn’t hurt much,” that it’s “not so bad.” But, “doesn’t hurt much” and “not so bad” only seemed to mock me. Despite the vast amount of information I had accumulated over the previous ten days, I am wading deep into the unknown, nearly drowning in a mix of fear and anxiety. As I drove the thirty minutes to the office I’m thinking about the needles.

Upon checking in I am shown into a standard exam room by an efficient but very kind nurse who checks my vital signs and goes over a list of questions about my medical history. Then she explains everything that is going to happen from that point forward. Her calm, deliberate, two-minute speech drains away some of the fear that has washed over me in waves. The nurse leaves, and following her directions I get naked.

I put on a hospital gown so it opens in the back and have a seat on the exam table as I wait for the doctor. I’ve been told it will be about ten minutes. This exam room has two carts set up with monitors and keyboards. The nurse has one powered up and sitting next to the exam table. I recognize the image on the screen as the pie-wedge that will display an ultrasound image. But it is the wand clipped in readiness on the side of the cart that gets my attention. The business end is about eight inches long and about the diameter of a roll of nickles. The doctor is obviously an advocate of safe sex as the wand is sheathed in a form-fitting condom. From my reading, and the nurses’ explanation, the wand will be used to get an ultrasound image of my prostate gland and map where the doctor will take his biopsy. That’s okay. What sets off alarms is the very slim metal tube that runs down the length of the wand. I start to go into meltdown as my forced-calm exterior gives way to the anxiety within. The metal tube indicates the ultrasound wand’s second use: to guide the placement of the biopsy needles. One at a time, a dozen needles will be shot down that metal tube by a spring-loaded biopsy gun, through the wall of my rectum to snatch and bits of tissue I wasn’t all so sure I wanted to surrender.

“Good afternoon, Mr. Kinnaman,” says Dr. de la Paz as he offers me his ungloved hand. “How are you feeling?” Summoning a weak smile: “A little nervous, but not too bad, I guess.” He sees right through my bluff and gives me a pat on the shoulder as he makes his way around the table. The nurse takes over. She gets me into place on my left side and has me draw my knees up toward my chest in a loose fetal position. She positions pillows for me, the last one between my knees. All the action is set to go on behind me, and the strategically placed opening in the hospital gown now exposes to the doctor what I would really rather lock-down and hide.

“Okay, now relax.”

The doctor begins by performing a digital exam of the prostate. This is a good bit more aggressive than the standard annual exam. If feels like he’s trying to get to the front side of the gland as well as the back. “Okay, Mr. Kinnaman, now I need you to relax.” As I try my best to follow his direction, he inserts the ultrasound probe. So far so good. The tip of the ultrasound wand assaults my prostrate and, it feels like, a lot more. If I didn’t have a clue where my prostate was, I certainly do now. While not painful, it was decidedly uncomfortable

“Mr, Kinnaman, you doing okay?” I evidently mumbled, because he asked again a little more urgently. I realized that not only was my butt going to act as host for the doctor’s ministrations, I was going to need to further take part by responding to de la Paz during the procedure. “Mr. Kinnaman, you’re going to feel a little pinch.” And with that comes several shots of Novocaine, or some such numbing agent, right into the prostate. De la Paz’ assessment of a “little pinch” from each injection is pretty accurate and I felt four little pinches before things became comfortably numb. I find my anxiety growing instead of fading.

De la Paz uses the ultrasound wand to take several measurements and pictures. The wand is moved left and right, up and down. I didn’t know my anus can move in so many directions. The doctor informs me that my prostate weighs 25 grams, about 5 grams more than he would like to see “for a man your age.” Then there is a break in the action. The doctor and nurse are consulting. The moment draws near when the biopsy needles will do their work, all pretense of relaxing “back there” is shot; I take a few deep breaths and try to ignore the technical exchanges between the doctor and nurse.

“Ok, Mr. Kinnaman,” he says, “you’re going to feel another little pinch.” Every move he makes is accompanied by grip and release, grip and release. I am nearly out of control with fear. “Shathunk.” I manage to avoid screaming-out in surprise and anxiety. The spring-loaded needle gun sounds like a staple gun being fired behind me. There is definitely pressure from the needle as it pierces the rectum wall, the prostate and then makes its hasty exit, but there is no pain. Oh, thank you, God, for creating Novocaine! As the second, third, and fourth, and the rest are announced I begin to breathe easier. “Shathunk,” now means we are getting closer to being done. “Shathunks” eight through twelve, feel decidedly different. When announcing these Doctor de la Paz said they were at the apex of the prostate. By the time he is done, 12 specimens have been collected.

When it’s over, the doctor comes around to the front of the table and shows me couple of pictures of my prostate and says that I should hear from him within a week. If it is positive, he’ll see me in two weeks, if it is negative, I have an appointment in three months. From the time he came in to the time he departed it has been 18 minutes.

The nurse has me get up slowly and watches me to make sure I don’t roll off the back of the table. Left to myself, I wash antiseptic and lubricant gel from the work zone and change back into my own clothes. From what I read on the post-op paperwork I was handed, this won’t be the only blood I see back there over the next couple of days. By the time I step off the elevator in the lobby, I am breathing normally.

UPDATE:

I have come across some other interesting post on the subject of the transrectal ultrasound-guided prostate biopsy. While my procedure was decidedly uncomfortable, it was not painful. My anxiety and fear of the unknown was greatly worse than what I experienced in the hands of my doctor. And this is a point that I have learned along the way (now five weeks after the biopsy), there is NO substitute for doctors with skill and experience. Seek them out, and then as your own journey progresses, ask these trusted men and women who they would want to see for the “whatever” that is the next procedure .

If all else fails, or your anxiety will keep you from doing what is necessary, Henry Morgenstein’s post, Prostate Biopsy, might give you some options.

This post gives a fairly unvarnished blow-by-blow. I like his line, “Fear Factor is a 10, actual procedure is a 2.” That is pretty much it.

Herb Greenberg’s blog post brings up another good point. There is no better advocate for your medical treatment than an informed patient.

While this post from Ron Kaufman is about his whole prostate cancer journey, his experience of the biopsy is very much what I have heard others say. What I think is very useful are these two paragraphs about early detection:

Friday, April 19 was another milestone day. The results of the pathology came back. Was I to be listed as cured, or did the cancer get away from the prostate, and was I looking at radiation, chemo, or more surgery.

It was close. Everything came back perfect. The cancer had come within 1 millimeter of breaking out of the prostate, but in fact had been caught in time. Time. If there is any message that can spell the difference between success and anything else in the detection of this cancer, it is being tested early and annually, and acting quickly once cancer has been found. One millimeter, a few human hairs of tissue thick, was all that remained between me being cured, and a survivor, and my ongoing war with cancer.

Entry 3: May 22, 2009

The Waiting is the Hardest Part

This week I have done a lot of waiting. I no longer know what to do with myself.

Carly Simon’s lyrics are so overdone that they have become trite (except for Heinz, I guess), but they are running around in my head abreast with Psalm 130:

We can never know about the days to come
But we think about them anyway….

Anticipation, anticipation
Is making me late
Is keeping me waiting.

-Anticipation, Carly Simon

Out of the depths I cry to you, O Lord!
O Lord, hear my voice!
Let your ears be attentive
to the voice of my pleas for mercy!

If you, O Lord, should mark iniquities,
O Lord, who could stand?
But with you there is forgiveness,
that you may be feared.

I wait for the Lord, my soul waits,
and in his word I hope;
my soul waits for the Lord
more than watchmen for the morning,
more than watchmen for the morning.

O Israel, hope in the Lord!
For with the Lord there is steadfast love,
and with him is plentiful redemption.

And he will redeem Israel
from all his iniquities.

-Psalm 130

I’m a Cubs fan. . . I know about waiting

In Spring 2002 suddenly appearing “liver spots” (actually petechiae bruising) had been met with curiosity on Thursday. I rarely show bruises, much to my wife’s dismay as she seems to share a genetic link with bananas when it comes to bruising; so I didn’t make much of them. Dad had liver spots, so probably would I. On Saturday a couple of bruises, startling purple and red explosions, appeared over a very short period. I called my GP’s exchange. Interrupting his golf game, he likely saved my life. Instead of saying “come and see me on Monday,” instead he said “hang up the phone and go to the emergency room. Now.” He said he would meet me there. That didn’t sink in.

When I got to the emergency room they were expecting me. That didn’t sink in either. After exchanging my clothes for theirs, a blood sample was taken, and a physical exam was conducted. I became a bit of a curiosity as seemingly random medical personnel would knock on the door and ask if they could check me. By now I knew the “liver spots” were actually petechiae, that is pinpoint bruises, and they were showing up everywhere. If you are old enough to remember the water-color books for children that had the pictures filled with dots—a child paints with a dampened brush that releases the color in each dot—well, that is what I had come to resemble, especially on my arms and legs. But they didn’t hurt. No one said any different. And it didn’t really sink in.

I had been left to myself in the exam room for over an hour, and I was bored silly. Fearing that some trauma may have come in to the emergency room (and that I had been forgotten behind my closed door), I finally went and opened it, made eye contact with one of the medical staff, and said I was just going to leave the door open, if that was okay. Back to the exam table to wait. Another blood draw and another hour. I must have dozed.

I heard some activity at the ER desk and padded over to the door where an ER doctor noticed me. “We’re going to be taking you up to a room real soon,” he said, “sorry for the wait. A nurse will be with you in a minute to start an IV.” A room? That was the first I had heard. Okay, let’s try a reasonable question: “If I am going to be staying, can you tell me what’s wrong?” “We don’t know,” says the doctor, “but we do know its not leukemia.” Leukemia! You were looking for leukemia? I didn’t know what “it” was, but “it” started to sink in.

Idiopathic Thrombocytopenic Purpura is an incidence of 1 case per 10000

Later I learned the diagnosis; I had ITP—idiopathic thrombocytopenic purpura. For no known cause (idiopathic = “we don’t know why”) my immune system started to destroy my platelets faster than my bones could manufacture them. The average healthy adult has a platelet count in the range of 150,000-400,000 per cubic millimeter of blood. My first blood test indicated a platelet count of about 16K. The second blood test the count was even lower. By Sunday morning the count was below 10K—and this was with having received blood products to fortify what my own body was creating. Sunday afternoon I was shuttled around. I had an ultrasound done and they were monitoring me closely for bleeding gums and hematomas in my mouth. Great bags of fluid were constantly directed into my IV. Not only was I continuously receiving platelets, they were trying to suppress my immune system with immunoglobulin to slow if not stop the spleen’s destruction of the platelets I desperately needed. As my platelet count dropped past 6K the bruising was showing up internally as well. The blood—my blood—no longer constrained by the platelets, was leaking out of the capillaries and pooling just under the surface, not only under the surface of my outer skin, but also that of my internal organs. Dr. Derderian and the medical staff were keeping me close to the equipment that could quickly determine if the event of bleeding in the brain or in my gut—but the doctors were grim, because if I would begin to bleed internally they would have to operate—causing more bleeding—to get to and try to repair any hemorrhage.

Harrowing as those seven days were, they did not affect me emotionally or spiritually as much as has this whole prostate biopsy journey. I was a leaky capillary away from an aneurism; I was an it-can-fail-any-moment-blood-vessel, or a surgical-knife-cut, away from death by exsanguination. And yet I was calm, cool, and trusting to the point of frustration to my wife and friends. I know that caught early (before there are symptoms), prostate cancer has a >90% cure rate and that there is really no threat of dying from it as there was even 10 years ago, and certainly 16 years ago as did my father. But my fear, my fear of not knowing, is almost unbridled. I put it again and again into the hands of God, and there still seems to be a portion that is held back—this fear seems to have a home nestled deep in my gut, in my heart, and in my head.

About eight months after the onset of ITP, my hematologist, Dr. Paul Derderian, announced that I was in full remission. He said that in all honesty, he could explain my remission no better than he could explain what brought about the ITP in the first place. I had spent a lot of time with Dr. Derderian over those months, and had come to know he was baptized Lutheran. When I thanked him for all that he had done, this great and knowledgeable man brushed it easily aside and said he only assisted, that I had obviously been healed by the Great Physician, because my health and remission was certainly beyond his comprehension.

Jesus, the Great Physician of both our bodies and our souls knows our every need, our every malady. He puts into His service all manner of people and technology for our care. Had my GP not interrupted his golf game to answer his page, or had not had a previous experience that had trained him to respond with his definitive charge for me to “go to the emergency room,” I would likely have died sometime in the course of the days before the next available office visit appointment. Of this I have absolutely no doubt. I also do not doubt that my Lord and Savior will carry me through today and whatever is yet to come in those days yet to come—and that along the way He will bless me in ways I can not imagine. Of this too, I have absolutely no doubt.

A friend just sent this to me: “Thinking about you and praying for you Psalm 56:3 ‘When I am afraid, I will trust in you.’”

Amen.

Now if Dr. de la Paz would just call…

Entry 4: May 27, 2009

Positive for Cancer

Micrograph of prostate adenocarcinoma, acinar type, the most common type of prostate cancer.

Ever since hearing that my elevated PSA might be a cause for concern, I had prepared myself for the news, preparing myself to hear that I had prostate cancer. Dad had it, why shouldn’t I? I’ve steeled myself so that I wouldn’t scream, or yell, or, God forbid, cry when I heard the news.

“Mr. Kinnaman, your results came back positive…” That really is the only thing I heard in our brief phone conversation. As Dr. de la Paz continued to speak I looked at the pictures on my desk, pictures of my wife and I on a cruise, pictures of our four grandchildren. I ask a few questions, write a couple of notes that mostly make sense later, but while hearing, I really am not listening. I have cancer.

The Roller coaster of Rage and Fear

Rage is what fuels all the reading I have been doing about prostate cancer in the days that followed the diagnosis. Rage is the cranking up of the roller coaster, “clack, clack, clack,” as I am taken higher, the rage that this should happen to me “clack, clack, clack,” higher and higher; rage, being pushed on by the idea that if I read enough I can find a solution, rage that compels me to exhaustion to find the next website, the next procedure, the next presentation on YouTube. And then just as I reach the pinnacle and seemingly have nowhere else to go, I overtop and begin the free fall into fear: fear of loosing my health, fear of the surgery, fear of radiation therapy, fear of incontinence, fear of impotence, fear that I’ve let you down, fear that dying will hurt, fear of leaving my wife alone. While on the way up it felt like rage would leave me with no place to go, fear seems like it could go on forever. And along the way fear throws me into switchbacks of loathing and pity and ultimately into the 360° of doubt: did I do enough, should I’ve been more vigilant, can I make a treatment decision that will make a difference?

Peace

A hymn derailed this mad train of my own making.

Picked weeks before by Pastor Mayes, the opening hymn stopped me cold. I’ve loved this hymn for many years; I love to sing it with gusto. But the words have never meant as much to me as the now did in the opening minutes of the Divine Service.

Christ is the world’s Redeemer,
The lover of the pure,
The font of heav’nly wisdom,
Our trust and hope secure,
The armor of His soldiers,
The Lord of earth and sky,
Our health while we are living,
Our life when we shall die.

Christ has our host surrounded
With clouds of martyrs bright,
Who wave their palms in triumph
And fire us for the fight.
Then Christ the cross ascended
To save a world undone
And, suff’ring for the sinful,
Our full redemption won.

Down through the realm of darkness
He strode in victory,
And at the hour appointed
He rose triumphantly.
And now, to heav’n ascended,
He sits upon the throne
Whence He had ne’er departed,
His Father’s and His own.

That line in the first stanza: “Our health while we are living / Our life when we shall die.” I’ll never sing it again the same way. These words stopped my voice in my throat. But in an instant they also stopped my fear, my panic, my rage. Just a few words hiding in a well-loved hymn, and I was pulled back into the loving arms of Mother Church. I could only listen to the next couple of stanzas, or I would have lost it. “Our health while we are living / Our life when we shall die.” For me a new cradle song. These words rested me firmly in the arms of Christ’s Bride, who then took me back to the font, and to the cross, and then to the Supper. I was soothed with the words and the texts of the Divine Service. Yes, the same words that I have proclaimed to others during the years of ministry, but I was hearing them with new ears, ears tuned by my own angst, my own fear, ears tuned by God to now hear how I was going to really be able to make it through it all. And it all turned around on a hymn. I’ll have it memorized soon.

Glory to God the Father,
The unbegotten One,
All honor be to Jesus,
His sole-begotten Son,
And to the Holy Spirit-
The perfect Trinity.
Let all the worlds give answer:
Amen! So let it be.


Entry 5: June 1, 2009

The Choices We Make

With treatment, I am not very likely going to die as a result of my prostate cancer, as did my father before me. The scoring and grading complete, I am among those with a 90%  chance of being prostate-cancer-free through at least the next ten years (10 years being pretty much the extent of the data), and can look forward to being a cancer survivor. Thanks be to God that such mercy has been given to me.

While my prognosis is just about the best that one could hope for, I am at somewhat of a loss before a buffet of good treatment options. Advancements in medicine offer those with prostate cancer a plethora of choices of excellent treatments:  da Vince, brachytherapy, IMRT, IGRT, clinical trials, active surveillance, proton beams, HIFU, laparoscopic robotic radical prostatectomy, cryotherapy. While the biopsy was certainly uncomfortable and nerve-wracking, and the news that I had cancer invoked rage and fear, having to pick my own treatment may yet be the most agonizing part of this journey through prostate cancer so far.

Dr. de la Paz told us that either surgery or radiation therapy will offer cure rates of about 90% or better, that is that after 10 years there is less than 10% chance of recurrence of prostate cancer. Hardly before I truly had the opportunity to rejoice in the prognosis, my mind was spinning at the idea that I will have to make such a momentous choice.

Dr. de la Paz told us that either surgery or radiation therapy will offer cure rates of about 90% or better, that is that after 10 years there is less than 10% chance of recurrence of prostate cancer. Hardly before I truly had the opportunity to rejoice in the prognosis, my mind was spinning at the idea that I will have to make such a momentous choice. It’s hard to confess this. Shouldn’t I be celebrating?  I sure wouldn’t have wanted him to say the only thing to do was go home and pray! While today’s prognosis means that virtually any treatment is available to me, today’s prognosis means that I will eventually have to choose my treatment from all the treatments available to me.

Pulling out the cross-section model of the male torso, the doctor carefully started at the beginning and showed us the position of the prostate in the body and its relationship to other important organs and structures. In his view, I have five reasonable choices: active surveillance (that is doing nothing but frequent tests and regular monitoring), surgery done one of two ways, or one of two radiation treatments. Using his pen he points to what else besides the prostate is effected by each of these choices. By my own research I have already decided that active surveillance, sometime called watchful waiting, has no place in our consideration: once the “C” word is on the table, we are beyond the point of waiting in my mind. De la Paz agrees that at age 50 with a history of PC in the family,  active surveillance would only be exchanging handling the cancer now or handling it later.

The surgery, called a radical prostatectomy, completely removes the offensive gland, and the urethra is then reattached to the bladder. Done the tried and true way, Dr. de la Paz would make about an 8″ incision down from the belly button to my pubic bone. Alternatively, one of his colleagues could use the daVinci robot to perform the surgery laproscopically through five small holes. The daVinci surgery promises a better chance at preserving the precious nerves around prostate and provides for a shorter recovery time. Either way, surgery means I will be peeing through a catheter for two weeks after surgery.

While a surgeon himself, de la Paz acknowledges that radiation therapies have about the same effectiveness in curing prostate cancer as a radical prostatectomy. The choices for radiation are either image guided radiotherapy or brachytherapy, which involves driving tiny radioactive “seeds” directly into the prostate.

But what of the morbidity, the side effects, the dreaded “I” words: incontinence and impotence? My own research along with conversations with prostate cancer survivors I have come to know have convinced me that the risk of prolonged or bad incontinence from either surgery or radiation is not great–in the range of 90 percent are free of any serious incontinence issues a year after surgery. Impotence is a whole other story. Impotence was an accepted cost of all prostate surgery until relatively recently. In the ’80s, surgeons found the nerves that control erections and perfected “nerve-sparing surgery” to save them. Research seems to support that three-quarters of patients my age or younger who have surgery regain satisfactory erections within a couple years. The reversal of the two “I”s isn’t an easy road, and there is no correlation in the published literature between a successful prostatectomy  and a man regaining all of what he had before the cancer. Impotency is an immediate reality after surgery. With radiation it can take two to three years after radiation treatment with nearly half of all radiation patients eventually becoming impotent. For many men, the road back from impotency is a long one, if they make it back at all.

My wife and I left Dr. de la Paz’ office nowhere near ready to make a choice. We live out lives shaped by the choices we make. I am afraid of making a wrong decision. More reading. more conversation. more prayer.

Entry 6: July 7, 2009:

I had surgery.

Entry 7: July 16, 2009:

My Friend Peter

bestest buds

I made a new friend last week. You don’t always get to pick your friends ahead of time, and such is the case with Peter. He showed up during the course of my prostate surgery. I was totally unaware of his arrival, but he was greeted by everybody in attendance as one uniquely qualified for his task. By the time I regained my senses after the surgery, Peter had obviously become a fast friend. He cared for me deeply and touched me in ways I had never experienced before. And I found I couldn’t leave him behind. Upon my release from the hospital, my wife and I made a place for this new friend in my life.

Peter has been faithful; despite my outbursts and even wishing him harm, he as stuck by me without question or recrimination. Peter is giving; he retains nothing for himself but passes on all that he has every minute of every day.

These hot, fast friendships have their challenges. We found that Peter was a bit demanding and a bit clingy. And while his friendship tapped an inner well I rarely thought about, having him around each minute of each day is wearisome. Peter is an “up front” sort of friend, but admittedly very private. So, getting ready to leave the house with Peter is stressful and frankly exhausting.

My friendship with Peter is as close a relationship as I have ever experienced. It is also an ill-fated relationship, for today Peter and I must be parted. The reality is that I must move on in my recovery, and I have to go, alone. Peter cannot go for me. The absence of his indwelling presence will be a void in my life.

Farewell, my friend, Peter.

[During a radical prostatectomy, a foley catheter is inserted into the urethra. The catheter assists the surgeon during the transection and resection of the urethra and then supports the urethra as it heals. The patient keeps the foley catheter in place from 7 days to 3 weeks depending on the procedure and the surgeon involved. I named my catheter "Peter."]

Entry 8: August 16, 2009

Surgery & Recovery Update

It’s been six weeks since my robotic-assisted (da Vinci) radical prostatectomy, that is, the surgery that removed my cancerous prostate. My employer has allowed me to work from home for the last two weeks and next Monday I return to working from my office. I have been aware for a little while that the surgery and recovery stage of my cancer journal needed an update. I reread my earlier posts to the journal and to log in and say, “it’s done” seems not just anticlimactic, but some how to short-shrift those who have followed along. But that is the reality: it’s done.

The hospital we chose to deal with is probably one of the finest we have had opportunity to be associated with. The pre-op/registration appointment meant that we had all the paperwork and testing done the week before surgery. On surgery day we arrived about an hour-and-a-half before the scheduled surgery time. We waited only a few minutes before my wife and I were taken to a private room associated with the surgery center. Street clothes exchanged for the latest in open-back hospital attire; identity verified and double-checked; surgical procedure verified and double-checked; IV and monitoring attached. Just as the activity settled down, Pastor arrived. The staff gave us a good 15 minutes together. What comfort to hear God’s Word, to hear, that even in these circumstances that the Lord is faithful.

Since it was the day of Preparation, and so that the bodies would not remain on the cross on the Sabbath (for that Sabbath was a high day), the Jews asked Pilate that their legs might be broken and that they might be taken away. So the soldiers came and broke the legs of the first, and of the other who had been crucified with Him. But when they came to Jesus and saw that He was already dead, they did not break His legs. But one of the soldiers pierced His side with a spear, and at once there came out blood and water. (John 19:31–34)

frenchcrucifix-9As Jesus hung lifeless on the cross, He was preparing for His Sabbath rest in the tomb and His victorious resurrection from the grave on the eighth day. His battle was done. You are preparing as well, and before surgery it is natural to have anxiety, even fear. Put your trust in someone else’s hands. Your doctors will work to bring you health and healing. However, remember that you have already received better care than any earthly doctor could give.

Jesus Christ is the great physician of body and soul who will work through your doctors and nurses and medicines to bring physical healing. This same Jesus allowed the soldier to pierce His side that He might pour out the fountains of life for you. His holy water washes you in Baptism, and His holy blood feeds you at His altar. Even amid your trial and tribulation, look to Christ. See His pierced side and behold the medicine of immortality. You are healed, both now and forever.

Prayer
Lord God, heavenly Father, may the water and the blood flowing from Jesus’ side on the cross that healed the whole creation now heal this, Your loved one, in both body and soul; through Jesus Christ, our Lord. Amen. (Visitation, CPH 2008. 95)

Da Vince robot-assisted surgery

Soon the room was again awash with activity as those who were to be involved with the surgery itself started checking in: surgical lead nurse, anesthesiologist, and finally my doctor himself. All is ready, now is the time: a handshake from my friend and Pastor, a last kiss with my wife, “I love you.”

Peace. Really I was at peace with whatever would happen. No matter the type of surgery there is always risk. No one expected any problems, no one wished for anything less than the best outcome, but should I not wake up again in this life, that was okay. Having done all that we could, I handed the rest over to the capable and loving hands of God. He would work out His will for me through the hands of doctors and nurses, and that was all right. I was at peace.

Surgery took about 3 ½ hours, during the course of which I lost my prostate, seminal vesicles and a couple of lymph nodes. The initial pathology done on the lymph nodes while I was in surgery indicated no spread of the cancer. That, together with the visual inspection of the prostate gave the surgeon the confidence to go ahead with the plan to spare the nerve bundles on both sides of the prostate.

Two days later I was home. Six weeks later I am returning to work, the last puzzle piece to returning to a regular routine. Except for the six new scars on my belly, it is almost like nothing happened. The reality is that there a lot of fine stitches on the inside—bladder, blood vessels, and nerves secured in different places—and I must stay on my guard to not over do and allow for all the healing to continue over several more weeks.

The pathology of the prostate showed a slightly elevated incidence of cancer than did the biopsy, but in the end it was all removed. Barring the cancer raising its ugly head in the future, no further treatment is indicated. In a couple of weeks I will take the first post-op PSA test and it is expected that the level will be <0. The post-op appointment and blood test results are scheduled for the day before my fifty-first birthday. I anticipate that we will be celebrating being cancer free, being a cancer survivor.

Entry 9:

Closing Thoughts

There are certainly some life lessons that I will take away from this journey. While this leg of the journey certainly may be done, the journey itself is not over. The Lord has used this awful disease in ways I already know, and in ways that may not yet be apparent. While we have had a good and solid marriage, dealing with this cancer has returned to us a tenderness born of deep discussions that hadn’t been part of our conversations for, well, probably before children, or before embarking on the return to school that lead to the call into the public ministry. Known to hold hands when we walk together, I find we touch a little more, cuddle a little more.

Perspective is another gift of the cancer journey. Probably like most males, my self-identity is hooked into my work. Six weeks away from work. I’ve never taken six weeks away from my work. I have come to realize that work is not only the tasks that make up the job but also the people with whom I work. The relationships are nearly as important for being successful in my work as is completing the tasks. And here’s another: as important as my work is, my time away from work is equally as important. The time outside of work needs to be carefully guarded and used. It is in this time outside of work that I can attend to my relationship with my wife and family, recreate, and attend to the several other interests that make life varied and interesting. Now that the largest chunk of my schedule will again drop back into place, it will be important for me to find the means that will allow this fresh perspective to create a healthy balance for my life.

So, I thank God for my cancer. I thank God for the changes that I have seen and the changes that I cannot yet so clearly discern or to which I cannot adequately give voice. Those who have followed my journey through these writing, those who have prayed on my behalf, now thank God with me for using this prostate cancer for my good. And thank you, so many of you, brothers and sisters in the body of Christ, for your prayers, thank you for your many messages, your tender thoughts and good wishes.

Now, its time to move forward—off to the next leg of this journey called life. May it be less eventful than the last.

To God alone be the glory.

 

Entry 10: August 2, 2013

Since Then

It’s been just over four years since my surgery to remove my prostate and ‘cure’ the prostate cancer. Annual testing confirms that the prostate specific antigen, the marker used for prostate cancer, remains at an undetectable level.

A website-based support group and community which helped me hear from other prosate cancer sufferers and survivors is http://www.yananow.org – Your Are Not Alone Now. YANA is a great place to hear the many stories of the men surviving after diagnosis of prostate cancer, to hear the long-term outcomes and the experiences of the many different kinds of treatments being offered, and to come to terms with the disease. One of the tag lines on the site is “prostate men need enlightening not frightening” and this is practiced in not only the personal stories, but the many articles that try to make some sense of the vast amount of information out there concerning prevention, statistics, treatment, and cure. My own story and yearly updates are on the YANA site.

After the surgery, incontinence and erectile dysfunction became ongoing issues. Post op work with my urologist countered most of the problems with incontinence, but a previous bladder issue coupled with the prostate surgery has contributed to a small ongoing annoyance in this area which I can mostly control with a few adaptions in my lifestyle.

The issue of erectile dysfunction (ED) after surgery was something that was, in hindsight, not well understood. While it is true that many, maybe even most, men do not have long-term ED issue after prostate cancer treatment, the reality is the many do. The degree of dysfunction can range from mild to profound. For the man–and his wife–it is an issue and possible outcome that needs to be considered. In my case the resulting ED was profound. Ultimately, after a year-and-a-half of post surgery ED therapy and treatment, with my ED not responding in any satisfactory way, I had corrective surgery during the holiday perisod between Christmas and New Year 2011. FrankTalk.org is a good place for men to visit (and join the community) and understand the physical and emotional challenges of ED. While not solely for post-prostate cancer ED support, among the FrankTalk men and administrator there is a good understanding of the issues involved, and much much good support. This men-only community can be a good place to listen and talk about an issue that often we can’t talk about openly anywhere.

There has been much talked about in the media about prostate cancer over the four years since my diagnosis and surgery. I’ve been asked, “would you make the same decision again, knowing what you know now?” My answer is ‘yes’. While each man has to ultimately make the decision himself, for me having the cancer out is by far better and outweighs the post-op incontinence and ED which are now part of my life. While the sites/organizations I mention above are not the only ones out there, they are the ones I ultimately used and invested my time. I

5 thoughts on “Prostate Cancer Journal

  1. My prayers go with you. While my PSAs jumped considerably…the biopsy showed no cancer. PTL! The tests did show an greatly enlarged prostate (10 x's normal size.) The surgery I had was called TURP. After 3 weeks now I feel about 85% back to normal. But God is good–but that is something you already know! Remain blessed in Jesus! Expect a miracle in His name! Dr. Barry L. Kolb

  2. Dear Pastor Scot….

    I just stumbled onto your blog (through a link from Bob Hostetler’s Prayer Blog). As a Lutheran it is refreshing to see your site – I will definitely explore it more as time permits. My reason for commenting is to thank you for writing about your Prostate Cancer journey. My husband was also diagnosed with Prostate Cancer about 3 years ago. I will definitely have him read your blog as we experienced so much of what you describe. Thanks be to God he was directed to the Dattoli Cancer Treatment Center in Sarasota for the brachytherapy treatment. It was a year-long process, but thus far his PSA level has remained below 0. Thank you again for writing! God Bless You!

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