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April 2018: I get my package from the life insurance company regarding my application for term insurance. They notified me that my application is "on hold" for the "below listed reason."
My Prostate Specific Antigen (PSA) blood test was outside of the normal range. It was 6.1 when the upper limit was 4.0. This hold on my application would remain until they received a note from my physician telling us that we're clear. Honestly, I was more concerned about the potential lapse in coverage than anything else. I had no symptoms of anything that was concerning to me. I call my General Physician for an appointment. Back then, I called him my doctor, because I only had one doctor. Since this was a financial decision, I had told my wife, Elaine, about this bump in the road that needed to be straightened out or worked around.
A phone call and a follow up appointment scheduled, and another blood test ordered. I know from my yearly physicals that PSA tests have been shown to give “false positives” in the past. That was why I was a little apprehensive when first offered the option. Going through a biopsy check just to find out nothing's wrong didn't appeal to me. Then, when I found out my Dad had his prostate cancer discovered by a PSA test, I had changed my ways and had been getting them for the last 4 years or more.
I meet with the doctor and test 2 shows pretty much the same results as the one done a month and half earlier. As part of the normal physical, I get the digital exam of my prostate. The doctor said he found nothing. But, he recommended that I see an urologist, as he is an expert. Again, I tell my wife and only her, my results. I'm looking on the positive. Yes, test is high, but prostate seemed good with exam. My doctor instructs me that I shouldn't agree with anything the specialist recommends until we discuss it together.
I find an urologist who works out of our go to hospital, but splits his time in an office in the next town over, a perfect set up for me. I make my appt. for 6/19.
June 19, 2018: I meet the urologist who lists all of the possible reasons why the PSA would be elevated, and lastly he says "and it could be cancer." I know this going into the appointment. I also know that if it happens to be cancer, I've been tracking it since I was 50. It is early as early can be. I know that chances for successful treatment are very, very high when found in the beginning stages. Let's find out.
After his PSA explanation, he says that he doesn't do any advising/consulting without performing an examination himself. So, I have to drop my drawers, get everything checked out, and have another digital exam. This time, he tells me that he did find 2 "abnormalities" on the right side of the prostate. "I recommend that we do a biopsy to find out." This is what my GP had thought would happen. I told the urologist that I will discuss with my doctor before I make any decision. Then, he said the next step is totally up to me. I can do what I want, and he is not going to push hard on what he thinks should be done. The ball is entirely in my court.
At this point, I'm already thinking that I want the biopsy. But that's likely the heightened emotional state I'm in speaking loudly to me. A discussion with my GP, and come to a rational decision seems prudent. I'm just hoping he agrees that we need a biopsy.
Next steps after elevated PSA
I meet with my GP and discuss the findings of the urologist. We talk about the raised PSA, plus abnormalities found in the digital exam, and my father's history. Thankfully, my doctor acknowledges that the specialist would be more proficient in detecting abnormalities than him. He agrees that all this adds up to moving forward with the biopsy. I am relieved. The biopsy is the sure way to find out what's going on.
But first on my to do list is to tell those closest to me. I find myself more concerned with how the family will take the news, rather than the possible prognosis. I tell my kids (22 and 20) in person. "I want to let you know how my doctor's appointment went." I explain that I have to schedule a biopsy to find out if I have prostate cancer. There are 2 possible outcomes and both are pretty good. (1) There is no cancer found. (2) They find cancer, but since the detection is so early, the chances are very good that we will nip this in its bud stage. Because I've had yearly physicals and yearly PSA tests, all with no issues reported, that this is the very 1st sign of this occurring. So, I'm not worried. "Neither am I" said Greg. I also tell them that their 83 year old grandfather (my father) had prostate cancer too, and he's currently retired in Florida. Lydia asked a question or two that I can't remember. Yeah, the news is a bit of a body blow to all of us, but we all want the same thing. Let's find out what we're dealing with. If it is the latter issue, then we're going to give a fight with all we got. The outlook is very bright!
My siblings are tougher to get in a room, as they're spread out around the east coast. It's late, and I don't want to call on the phone or wait to tell them in person.
So, I do it electronically via e-mail. I don't want to wait any more than they have to. I send an email with the typical Mom and Dad subject of "My MD visit," just to poke a little fun at how non-pleasant that subject line and the email that usually accompanies it is. (That's the usual subject line they use when they share some not-so-good medical news with us). I pretty much catch them up on exactly what I had said in this story. I end it by telling my brothers and brother-in-law how important it is to get a yearly physical and to get a PSA test. They need to do it! I urge the same to all you reading this too!
I call the urologist's office back to make my appointment. I've called on 6/25 and working me into both the doctor's schedule and the close-by facility gives me a date of 8/7. Now, I've got this hanging over my head for another month and a 1/2. On the plus side, it doesn't appear to be urgent.
Waiting for the biopsy to happen
July 2018: So, Elaine and I arrive a little late, but we catch the last part of one of the urology surgeon’s talk on watchful waiting as a prostate cancer treatment. We’re here because there was a flyer in my prep packet for my biopsy (scheduled for August) that invited us to this discussion group and presentation.
The topic really has my interest. Something is up with my prostate. Maybe if I can blast it with good nutrition and loads of apple cider vinegar, and all natural foods, I can starve this cancer or cancer-like issue. Maybe I can just watch the prostate as it shrinks or heals after eliminating all that sugar and fatty stuff that cancer loves. The watch will be to watch it starve it and shrink away. Or, if it doesn’t happen that way, then we’ll take different action. This is what I was hoping to hear about. Hit this thing with nutrition and watch it closely.
It didn’t take too long to figure out that this discussion is not the discussion I thought it was going to be. The doctor is talking about something called Gleason numbers of 6 or lower or 3+4 (but not 4+3) and if only there were 2 or less samples of the biopsy that showed this, etc. I had brought my notebook and took frantic notes, thinking that this was typical doctor speak going over most of our laymen’s heads.
It wasn’t until the doctor was fielding questions that I felt like I was an Algebra I student who found himself in a Calculus 2 class. One gentleman asks, “So, if I had a Gleason score of 4+3 in both of my positive samples, would I still be considered a good candidate for watchful waiting?”
“It depends. How old is the patient. What is the surgical history? There are more factors than just Gleason scores ….”
Oh, boy. I think I have to do some reading real quick! The only numbers I know are that of the PSA results. It was like hearing the Calc class talk about integrals and the chain rule when I’m up to a line’s slope = rise over run. (If you don’t get any of those terms, than that demonstrates my sense of confusion perfectly).
The speaker finishes taking questions and wishes all of us the best. Then, the group moves all the chairs into a huge circle so that we all can see each other. This is a discussion group. In the circle are men from a cross section of life. Caucasians, African-Americans, Hispanics, retirees, working people, white collar workers, blue collar workers, and so forth all sitting around this circle. All introducing themselves and asked to share their story or why they are here. More Gleason score talk comes out. Some find out late that they had cancer. Some are getting hormonal treatment. Some had the prostatectomy 6-months ago. Some had the surgery 15 years ago. Some are getting radiation treatments. Some are doing watchful waiting. I look to be one of the youngest one in the group, and definitely the least experienced one.
The introduction circle gets to me. “My name is Paul. I am 54 years old. My Dad is a prostate cancer survivor. He had the surgery over 20 years ago. I know that the disease is hereditary, so I’ve been getting the test every year at my physical. I have had no problems until this year, when my PSA was a 6.1. I am having a biopsy in August to find out what’s happening. I was interested in seeing if watchful waiting could be one of my treatment options if I am found positive.” I mention my Dad because right now I don’t know if I have cancer, and I’m not sure I’m a sympathetic figure in this circle. But, what I don’t realize, is that all of these men were in my shoes at one time. That is, their PSA was elevated, and they’re waiting to hear what’s going on before they have their biopsy.
One More Lap Around the Circle
Another aspect of this circle strikes me. I hear of all the tough times that these gentlemen went through or are currently going through, and each one gives me cause to pause.
Yes, watchful waiting really has no side effects as far as treatment is concerned. But, the days, maybe weeks, before the regularly scheduled biopsy are filled with worry, as is the excruciating wait for the results afterwards.
The men who are downright humbled and distressed with one of the side effects of their surgery, erectile dysfunction. You can feel the pain in their voice. “The worst part to deal with is the ED,” and another, “Yeah, well, there’s the ED….” Ugh!
There are men who speak on having radiation treatment because the cancer reappeared after their years-ago surgery. They sound tired. Is it from renewing the fight, or is it from the radiation?
A man tells us he is on hormone therapy to shrink his tumor. He’s taking estrogen to make sure that testosterone doesn’t feed into the tumor. Of course, that has its side effects too.
There are men that had the surgery, and one year later still suffered from incontinence. One veteran of such a case tells us, “If you are still having issues 12 months afterward, there is something you can do about it.” He and others like him have had the sling surgery, which corrected the incontinence via a procedure that repositions the bladder. That is, they had another surgery to correct the problems that they gained with the original surgery.
One man wears dark pants to work because of the fear of his leakage showing.
Another man has an elevated PSA, but he’s just can’t put himself through the procedure needed for going through the biopsy.
I’m hearing all these stories, and my heart melts. Yes, this was an information session on watchful waiting, but I quickly see that that was the secondary reason for this meeting. This was a monthly meeting for men to talk about what’s going on with their fight in front of many sympathetic ears. Some of those ears have heard or seen it before. Some are anxious to learn from these shared experiences.
I have to admit that that night I wished I was not one of these guys. That this would be my last meeting. For the first time since getting that letter from the insurance company, I was afraid. I was never afraid of dying or getting killed by this disease. My good fortune is from being around when there is a screening test to warn me of possible prostate trouble as early as possible. Thus, I have no fear from the cancer. I am afraid of all that other stuff that goes with fighting the cancer. I am afraid that I’ll be the person needing the sling surgery. Of being that person who will have to work hard a second time of putting the cancer down. Of being that guy with the dark pants. As I get in the parking lot, as God as my witness, I feel the slight coldness of terror inching into my soul. But, I fight it off, and push myself to keep the hope shining bright.
With that said, I’m thankful for all the donations that all of you have given. Maybe, just maybe, your donation will get us better treatments than the ones we have now. The ones we have now definitely save lives, but I’m thinking that each gentleman around that circle would think that there is room for improvement. If so moved, please consider helping the Zero Prostate Cancer movement with a donation, if you haven’t already. Thank you so much from all of us guys in the circle.
Insert Faith Explanation Here
So, I can’t quote chapter and verse from the Bible, but I can remember things that I have heard and read since childhood from it. For instance, there is the parable of the wise and foolish builders. The wise builder built his home on solid rock. The rain came down, the floods came, and the winds blew and buffeted the house, but it did not collapse. It had been set solidly on rock.
The foolish builder built his house on sand. When the same rain, floods, and wind came, the sand under the house washed away, the house collapsed and was completely ruined.
When you are on the cusp of finding out if you have cancer, it is like having the rain coming down pretty hard. Soon enough, the floods will begin to rise. But my house is built on the solid rock. My rock is my faith. I put my hand in the hand of the man who stilled the water.
I love being a Roman Catholic, but the part of the faith that ‘floats my boat’ is hearing and reading the Gospel accounts from Matthew, Mark, Luke and John. To some it might be stories that are repeated over and over. But to me, they are familiar anecdotes that come in nearly daily doses of my life to help me remember how to improve myself. Whether it’s a Sunday Mass Gospel reading and homily, a reading from my little pocket-size New Testament, or preparing breakfast while listening to the readings of the day, I love hearing how Jesus taught the people of his time and in turn teaches us.
Here are the things I try to take with me in my daily grind of life. If Jesus criticizes behavior, I try not to do that behavior. So, I won’t blare a trumpet after giving a donation to the poor. I won’t be the first one to cast a stone if I have committed a sin.
If Jesus ever explains anything, than it is true. If Jesus says that when 2 or 3 are gathered in his name, then He IS there in the midst of them. If God the Father will welcome you back into the family, like the Father welcomed home the Prodigal Son, then it is true.
Lastly, if Jesus acts, then that is a behavior to model myself after. If Jesus forgives Mary Magdelaine instead of letting the crowd stone her... If he actually stands up for her, when no one else would, then that’s behavior I should try to model.
Which brings me to the time before I have the biopsy. A month and a half of waiting, and it comes to the week of the procedure. I send an email out to my family asking for their prayers to help this house stay steadily on its rock.
"I am asking you for your prayers for me this Tuesday. I'm going for my prostate biopsy then at 11:15AM. …
"My concern is with getting the results. Am I concerned that it's the receiving of or a reprieve from a death sentence? No. I am confident whether a negative or positive test, I'll be seeing many, many tomorrows.
"My concern is that there is potentially a whole lot more 'stuff' for me to do. 'Stuff' I'd prefer not to do. But, if that's the cross I'm asked to bear, I will certainly carry it, with a minimum of complaints as possible.
"I can't help but think of Our Lord in the Garden of Gethsemane. 'If it is Your will, Lord, take this cup away from me. But have it as You would have it, not as I would.' What better model to look to?
"Any prayers, good wishes, thoughts, etc. that you can offer will be a welcome comfort for me.
"Thank you, in advance!
The Biopsy Appointment
I’m lying down on a table with my face about 6 inches from the wall. There is no pretty scenic picture to look at. It’s just a blank wall. I now realize why there is a handle so low on the wall next to the table. It is the perfect height for when someone is on their side with their posterior facing inward, and they need something to hold on to.
I hang on when the procedure starts. The procedure is called transrectal prostate biopsy. The plan is to use an ultrasound (I think) device within the rectum to locate prime spots to take 12 tissue samples from the prostate, 6 from the left side and 6 from the right side. The focus, extra time and care is going to be on the right side of the prostate. That’s where the abnormalities were found with the digital exam, and we got to make sure that we get samples from those areas.
The extractions of tissue feel more like the snapping of a rubber band on your skin. Not that painful at all. But let’s flatly say that the procedure had a very high score on the “uncomfortable scale.”
The doctor was kind enough to give me the “halfway through the biopsy taking” alert. “How are you doing?”
“I’m okay!” Translation: “stop talking and keep on working!!”
After all the samples are taken, he tells me we’re all done with the biopsies, but that Steve, the tech, is going to take some more images before the procedure is finished.
I get the post-procedure run down from the tech. It will be normal to find blood in the urine (and other stuff). Totally normal. That could continue anywhere from 5 to 10 days. Also, I got to make sure I finish taking the antibiotics. If I get a feverish, call the office right away, and let them know.
“I promise I’ll do that,” but I’m hoping there will be no need. With all the prep work that I followed to a tee (I’ll spare the details), I’m thinking that I’m clean as can be in there.
The doctor comes back and tells me that it’s going to take a few days for the lab results to come back. “I will call you as soon as I get them.”
Here’s my dilemma. I’m going to go camping at Cape Cod in 2 days for a duration of 5 days. Do I want to find the results out while on vacation, my time ‘away from it all?’
We leave it at the doctor calling us with the results, and it will be up to me whether I want to answer the phone. I really want to forget about this stuff for the time but I’m leaning toward finding out. The bottom line is that the vacation would be spoiled anyway if I started worrying about what message was left?
The second dilemma to deal with on vacation is if I go swimming in the sea at the Cape, I have to make sure I don’t pee in the ocean. There are rumors of great white sharks visiting while we are there. They’re notorious for sniffing out blood. Ok, so not as big a deal as the first one, but still!
The good news was that he didn’t call while we were on vacation. We also went swimming in one of the campgrounds’ ponds. There are no sharks that I know of in the fresh water ponds in Cape Code. All in all, it was a fun, relaxing time. We visited friends, did some campfires, went out for dinner, had great ice cream, and enjoyed great family time.
It was only after we got home and finished unpacking that I got the doctor’s call.
THE Phone call
It’s the doctor who performed the biopsy on the phone. “Hi, Paul. I’m afraid I got some bad news.” There goes the wind out of my sail. “Your biopsies came back positive for cancer.”
Elaine is standing beside me, anxiously awaiting. She mimes a thumbs up or thumbs down sign. I give the thumbs down signal. We hadn’t talked about what means what. I realize thumbs down could mean negative. But by my expression, she knows what it means.
“Out of the 12 samples taken, 4 of them were positive and 1 was borderline.” Right. My ears were hearing, but I’m not sure I was actively listening. “I don’t perform that type of surgery, so I suggest that you set up a consultation with a surgeon.” Yep. Yep.
“Do you have any questions?” No, not right now.
“OK. Take, care,” he said with a voice filled with sympathy. Last time I talked to him he was trying to be light-hearted and put me at ease with the impending biopsy procedure. This time, he had a very serious tone which I greatly appreciated. How many times in his career had he had to tell the bad news to someone? He definitely had it down.
I rehash the phone call with Elaine. “We’re going to get through this, “ she tells me.
“Yep,” I say in a choked up voice. Rats!
I telephone my parents. I calmly tell them about the phone call. When they ask about the next steps, my voice tightens up again.
“I have to make an appointment to see a surgeon, “ barely able to get the phrase out.
“OK, Paul. Let us know if you need anything.”
I croak out an “I will,” and we exchange ‘I love you’s. F-in cancer!
More phone calls to the family. A text message if I can’t get a hold of them. Things are going to be changing in my life. That sucks!
Brother-in-law Tim gave me my new mantra. ‘The fight is on!’ I am ready to kick cancer as hard as I can out of my body!
After the initial body blow, there were many positives. There were no visible tumors. The biopsy and scan report showed ‘negative’ for tumors. I was in pre-tumor diagnosis, a great place to be! The 4 samples that tested positive were all Gleason scale 7, just one tick above the lowest level of aggressiveness..
I had a PSA test last year that was negative, so we are way early here too. I did not wait 10 years to have the test and find out too late. This is squarely in the ‘bud’ stage, so I can nip it.
I was also in good shape physically where I exercised 4 to 5 times a week for 30 minutes. Each time I burned 600 calories and clocked in at 4+ miles on the elliptical. I was under 200 pounds, so I was fit to handle surgery and recovery.
Finally, I got a strong faith, and my family was praying hard for me. I put my hand in the hand of the man who calmed the sea.
Now, a couple of calls for appointments, one with my general physician, and the other for the urology surgeon who works out of Hartford Hospital. The fight is on!
I got prostate cancer. Now what? More doctor appointments.
First my GP. In the umpteen years since he’s been practicing medicine (he is now retired), I find out that I’m the second youngest patient of his to be diagnosed with prostate cancer. The prize winner was 47 years old. I’m 54.
Actually, that is a promising stat, which I didn’t realize then. Being younger gives me more options in cures, and hence, more probability of living a normal life. [HINT to all you male readers 50+: get your PSA test done!]. The doctor advises me that I should talk to both a surgeon and a radiologist before I make any decisions. Also, please call him prior to the decision too.
By the time I meet with the urological surgeon, I’ve done my background reading this time. I know Gleason scores. I know the different types of treatment. Elaine and I are meeting to get a little more information regarding results and my prognosis after the biopsy.
Of course, when we meet him, we find him younger than me (when did that happen that all my specialists are younger than me?). He proceeds to do an excellent job on the pros and cons of all the major treatment options.
The short of it for me is that radiation treatment has little or no side effects in the short term. Life as I would know it would continue on as it had been for years. The intense radiation could cause the possible side effects in like 5 or 10 years or more. The weakened prostate and surrounding areas could show up in symptoms that include incontinence and ED.
Not only the function of the prostate, but the radiation could do a number on the prostate and its surrounding tissue. It is kind of like melting two LEGO blocks together. If something reoccurs,later, it would be very difficult to remove the prostate from the other tissue around it. Even if surgery is successfully done to remove the prostate after radiation, the probability of the same side effects increase dramatically (around 80%).
So, what started out as promising, gives me the willies when we're talking about the tail end. Not sure I'm into this radiation.
The short of it with surgery, the prostatectomy, is that these side effects take hold immediately. 100% of the time, the patients suffer them within the first 3 months. But, over time, these effects lessen. They are overcome in as short as 3 month to perhaps 12 months.
Surgery first is like removing that LEGO block and keeping all those around it intact. It is cleaner and simpler to remove prior to any radiation. In addition to the recovery from side effects, radiation is a very viable treatment in the case that the cancer returns. It is not only viable, but it would be extremely effective with very little side effects.
The surgeon describes surgery first as giving us radiation in our back pocket for later.
“What about watchful waiting?” I ask.
Since I have a 4+3 Gleason score in 2 of the biopsies, that option is not recommended. The cancer is too aggressive. Plus, being 54, I may be watching for 30 years or so. Ideal watchful waiting candidates have a slower growing cancer, and have a higher risk surviving the surgery. That’s not my case. I'm a little bummed, but that definitely doesn't sound like a good fit for me..
For me, the surgery sounds like the right option. I want to book it already, but the plan prior to the meeting was to find out about all the options. Next is the radiologist.
The Next Appointment's Waiting Room
I got a meeting with the radiologist out of the same medical group. This is the second part of my research on treatment. I’ve been to Hartford Hospital and the neighboring Children’s Hospital on many occasions. I know how to get there. The parking garage is familiar. The walk to the hospital or Children’s hospital is familiar. I’ve been here many times. This meeting, though, is at an address I am unfamiliar with, 85 Retreat Avenue.
I have the GPS guiding me, and it directs me to Retreat Avenue. As always, I slow down to about 25 mph in fear that I don’t drive past #85. The building is slightly set back from the street. Then I see it. In huge letters across the top of the building, there is a sign that reads “Helen and Harry Gray Cancer Center.”
More wind blown out of my sails. It’s one thing to be treated at or visit a hospital that handles all types of care and illness. But, when you go to a building that has the words “Cancer Center” in it, that means the people going there have one thing in common. They’re not having their tonsils removed, or a knee replaced, or a broken bone set. They are coming there because they have cancer. And here I am pulling into the driveway of the “Helen and Harry Gray Cancer Center.” It sinks in a little more deeply. I have cancer…. Rats!
Nothing against the facility. It is beautiful, spacious, comfortable, and relaxing as can be. It is library like with no cell phone conversations allowed. Quiet rules the place here. I sit down in a spot away from most distractions, and begin filling out the paper work. More reminders. More sinking in. “Have any of your parents or siblings been diagnosed with cancer? If Yes, how old were they?” What is my purpose for the visit? When was this diagnosis first made?
I can’t help but occasionally look around to see who else is here at the Cancer Center. There’s a woman in a wheelchair being pushed from the front desk. Others are older than me getting helped up by their adult children as they walk with help to the waiting doctor’s room.
Man, I am so lucky! I feel good. I look healthy. In my mind, I could pass for a guy who is filling out a job application, and not my family history with regards to cancer. I thank the Good Lord for helping me catch this thing early. I came in under my own power, and I will walk out like absolutely nothing is wrong with me. I’m thankful that I didn’t see any kids in this room. That might have lowered the entire sail on me.
But, I’m here to meet the radiologist. To get some more answers. I’m not here to pity myself or anyone else. I’m here to find out about the rest of my treatment options, then go forward knowing all the facets of all the treatments. Then, I will know full well that I made the right decision for me in kicking cancer out of my body!
When are they going to call me?
The Other Option
I talk to the doctor to get more information on his area of expertise, radiation therapy. Even though I was leaning very hard toward surgery, I am so glad that I had this appointment. Here is where I saw advances being made. This is where I saw yesterday’s donations paving the way for any possible option in this radiation therapy.
(1) Old days of prostate radiation. Set up a rectangle where the prostate will sit entirely within. Radiate the entire rectangle. Good news was the prostate and its cancer all get a dose of lethal, cancer-killing radiation. The bad news is that so does all that area in the rectangle that didn’t have prostate tissue in it.
Nowadays, they have a 360 degree range of radiation that allows pin point accuracy so that the prostate is outlined and completely covered in radiation, BUT no other tissue is hit!
(2) Previous radiation treatments were made in a series of 10 to 16 visits (I think). This was at a certain dosage of radiation that was good for the patient and bad for the cancer. Well, I would be a candidate for the new plan of care that had less treatments but higher dosage. They had great success with ‘younger’ patients like me. Visits would be cut in half, but effectiveness would be equal.
(3) The doctor also had explained that even if cancer returned to the body and the prostate that yes, surgery might still be dicey, but they’ve had successes with different attacks besides surgery.
He had said that they had patients where that initial treatment was unsuccessful, but their next alternative had been. And, he went on to say that they still had other options if that first alternative had failed to get the cancer.
This was exciting and wonderful news, the kind of news that you love to hear coming from a Cancer Center. Sorry for the shameless plug, but this is where I hope to see our donations go. More strides towards better care. More time with families and less time in hospitals. More success stories and a lot sooner! Thank you for supporting my 5K run/walk!
The doctor did give me his opinion that I should go with surgery. It is ultimately up to me. He told me of a patient within the past week to whom they all recommended he get the surgery. He opted for radiation therapy. To me, the pre-cancer life style isn’t that important that it was worth the gamble on the future. Gambling that the radiation kills it all. That it won’t ever come back. That if it does come back, that treatments will have advanced so far that any hurdle of the past will be easily overcome then. I’m not sure if that was what that other guy was thinking, but for me, I like the idea of getting this early stage cancer completely out of me. This doctor is of the same opinion. Just one more opinion to go, my general physician.
In all honesty, I was thinking of going against my GP’s recommendations if he thought that surgery was not the route for me to go. Fortunately, he agreed with the other two experts, so it was decided.
I had made it to this decision point (the doctor’s words, not mine), and I was 100% committed to have surgery. I had done some research, and I asked some questions. I was comfortable with the explanations. When I didn’t understand, I asked until I did understand. Thus, I was comfortable with the best decision for me.
The gentleman who was in a similar situation to me was comfortable going in a different direction. If he was committed to it and was putting his maximum effort into getting better with those treatments, then that was absolutely his best choice. To me, I’m not sure I could get 100% behind something other than surgery. This was my best option. So… let’s book the surgery!
It was August 31st. The next available surgery date for my surgeon was Monday, October 8th. I book it, but I honestly thought it would be more recent than 5 weeks into the future. Now, I got a whole lot of time between then and the surgery. It’s time to get prepared, physically and mentally.
How is the best way to get ready to kick cancer out of your body? That’s what I didn’t know. The best place to start is by putting my hand in the hand of the man from Galilee.
At the risk of ‘already receiving my reward’ for sharing my prayers in public, let me say that to me this is a vital, inseparable part of me having any chance of beating cancer. I cannot do it on my own. I have to go back and rely on what Our Lord had said (it’s all true!), and what he had done (and try to imitate). For some reason, I was not comfortable in asking God for something big for myself. I usually ask Him for little things like having a good day. He has provided me with many blessings that I have thanked or tried to remember to thank Him every day. But to ask Him for something big like to intercede on my behalf, that is strange territory for me. Praying for intercessions for others? No problem! For me, I don’t know if I can.
“Paul, You GOT to!” my father had told me when I said this to him during one of my phone calls.
Jesus had told his disciples that if you want something from the Father you have to be persistent. You have to be like the man who goes to his neighbor’s house late at night. The man needs some bread. He knocks on his neighbor’s door. ‘Go away,’ the neighbor yells. The man tells him what he’d like him to get for him (bread) and keeps on knocking. ‘Can’t you see that I’m in bed now? I’m not getting up.’ The man continues to knock loudly until the neighbor finally gets up and out of bed, goes to the pantry and gets the bread, and gives it to the man. He did this so he could finally get some peace and rest. That was the parable that Jesus used to show us how we are to ask God for something. If Jesus said it, it is true.
“For when does a father, when his child asks for a fish, give him a serpent?” God is a good father. I’m going to ask him for a fish, and I’m going to ask him every night.
Most every night until the eve of the surgery, I walked our dog. It’s just me, the dog, a big sky full of stars, or clouds or the moon, or maybe the moon behind clouds, and me, prying open my heart and asking Our Lord to help me out.
Now I can’t tell you the exact words, since I had done it extemporaneously. But, it was pretty much about the same three things that worried me about the surgery.
“Lord, if it is your will, help remove this cancer from my body. You know what is best for me. You know what I can best endure. But, Lord, I ask you, please have the surgeon remove every bit of the cancer. Please do not have it come back. I am begging you, Father, to have pity on me, a lowly sinner. Please take this cup away from me. Help me get this cancer out of me. But, have it as you would have it. Never as I would have it. …”
Then, when I’ve completely pleaded my case for a cure to cancer (roughly 5-10 minutes in length), I ask Him to help me with the post-surgery symptoms.
“Lord, the cancer cure is the most important thing I ask for. But, if it is your will, help me be on the short end of this incontinence recovery time. I know that it is minor compared to the cancer, but if you can help me get over this symptom as soon as possible. Again, you know what I can handle. You know how much my yoke can carry. I’m asking you, begging you, to please lighten this burden for me. Can I please be one of the group of men who recover after 3 months of surgery? It is minor, I know, but I would love to be able to be healed on that account by the 8th of January. Have it as you would have it, never as I would have it. But, please help me recover sooner rather than later. If it is Your will.”
Again, that would go on 5 or 10 or 15 minutes until I was satisfied that I expressed every bit of what I asked for. Then, lastly, I ask the Lord to help me with the ‘other stuff’ that is a side effect. I make sure that it a third priority behind the cancer and the incontinence.
The prayers all feel the same. They all vary in length, but I move on only when I feel that I got what I wanted to express out of me. They all bring me to the verge of tears. I am helpless. I can do nothing. But, I trust that God is listening. I do this every night. I am trying to knock as loudly and as often as I can. If I don’t ask Him for it, then why would He give it to me?
Yeah, I’m also continuing to work out to try to get physically strong too to help that recovery. Maybe it isn’t such a bad thing that I have to wait a little over 5 weeks.
Here is the cool thing about the surgery. It sounds, looks and feels modern. It gives me the feeling that I am the great beneficiary of those supporters before me. Picture this, I am laying on a table with 5 incisions in my stomach area where tools are inserted. Little metal arms with clamps, scalpels, needles, sutures, heated tools to do control burns, and, of course a camera and light to see all that is happening. The surgeon controls all these tools remotely by robotics while looking at a screen. If fact, he is sitting feet away from me. These robot arms don’t shake. They move only when they are signaled to do so. The arms can spin 360 degrees which comes in handy when making suture knots. It is truly 21st century technology.
So, thanks to all of my friends and family who have supported this 5K run. I feel that we are ‘paying it forward.’ Wouldn’t it be great if this 5 hole arthroscopic surgery of 2018 will seem a crude, maybe even borderline barbaric for the next generation fighting cancer? Better yet, maybe the moment the cells go rogue to try to turn to cancer, we’ll know. We’ll stop them dead in their tracks. Wouldn’t it be great to not have to worry about advances in surgery, because there wouldn’t be any need for surgeries? That’s what I’m hoping all this good that you’ve donated does. Thank you!
Just to finish up my personalization of the moment I get my treatment. As the date of the surgery gets closer and closer, I tell more and more people that I have cancer. I’m not ashamed that I’m calling in all my faith-filled and faithful friends to help me get through this. I’ve asked for their prayers if they can find some time to do so. It’s not a comfortable position to be in. I’m not a fan of being a ‘woe is me’ guy. So, admitting to friends that I would like them to pray for me is really, well, humbling.
The good news is that I get responses in spades. Chris’ Mom is praying daily rosaries for me. Jill has a nunnery praying for me. My parents have offered a Mass for me. The siblings, the immediate family, all giving me their prayers. Many friends send their thoughts and prayers. I get the Anointing of the Sick Sacrament, and my priest is praying for me. And I continue to beg and plead for God’s grace in helping this be a successful surgery and recovery, almost every night. Spiritually, I am ready for the surgery.
Physically, I had a little hiccup the week before my surgery. I get a nasty head cold. I pound my fluids, and fortunately by the time the eve of the surgery comes, I am healthy. I may not have continued my regimen of work outs, but I had a good routine before the cold, and I generally feel strong. I have started my Kegels, and I am hoping to get a head start on post-surgery recovery with that.
Mentally, I am 100 percent convinced that this is the right decision. This is what I need to do. The surgeon agreed. The radiologist/oncologist agreed. The general physician agreed. I am arguably in the best condition I’ll be in the next 20 years or so. I really should have the surgery when I am in this condition. I want this cancer out of me as soon as possible. Not wait 10-16 weeks. I want it kicked to the curb. Out of here! I am ready for this surgery!
The morning of the surgery I have to leave the house at like 4:45AM to get into the hospital between 5:15 and 5:30AM. I also have to take one more shower in the morning, with no shampoo and with a brand new anti-bacterial soap and its new sponge. As basic clothes as I can get away with for early October are on my body. Elaine is driving me in, and it is dark. We’re listening to the morning prayers broadcast on the Catholic radio station WJMJ. “I will make this day, my prayerrrrr!...” My spirits are high. I am confident that things are going to go well.
I meet the anesthesiologist, personally recommended by our friends David and Sharon. I meet the surgeon. I meet the nurses. I slip out of my clothes and into my robe. I’ve never had major surgery before. I know it’s the absolute right thing to do, but there is just a twinge of nervousness. No fear though. Just the energy of trying to get there on time, and I’m here, and I’m ready. Let’s get this fight on!
I find out later that I was in surgery for 6 hours. I spent most of that time with my feet above my head. Hence, Elaine says that my face looks swollen when she first sees me come out of surgery. A whole lot of bustling going on. I’m not exactly sure where I am. The nurse is telling me that we are going to get a room for me. They don’t have one quite yet, but we will get you one. I’m thinking that I’m okay in this bed where ever it goes. The next thing I know Elaine and Marie, my mother-in-law have to leave. It seemed like 30 seconds. I’m told it was 5 minutes.
I do get in a room. I’ve got a catheter and a tubes coming out of me from my hand and arms. Well, my recovery starts now. I’m instructed that I have to use the breathing exerciser each hour to try to expand my lungs as much as possible. This will help me get over the effects of the anesthesia. Breathe in and try to get to at least 1200 each time. Do this ten times in an hour, each hour. You want 1200? I take a deep breath and watch the ball floating above 1200 on its way higher. How about 2200? I say to myself. Still inhaling… How about 3000? Lungs nearly at their maximum… How 3500? Exhale. Whoooooh! Nine more to go.
This is how I mark my hours. It does help that there is playoff baseball game. It also happens to be the Boston Red Sox versus the New York Yankees at Yankee Stadium. It is a long game, but as a Red Sox fan that’s all right as I watch a total barrage of hits and runs. Each hour, I take a break and try to get to 3500 on the scale.
The nurse suggests that I should be walking later on. Maybe ten minutes or so. See how I do. I have an initial set back when a huge wave of nausea hits me right in my face and stops me right in my tracks. Then I burp, and I’m okay. Next time I walk, I go around the floor for 30 minutes. The fight is on!
This is the attitude I take with my recovery. I am going to do the best that I can. No excuses. Why should I stop myself short? To delay my recovery? The more I breathe, the quicker my lungs come back. The more I walk, the quicker I heal. I want my lungs back quicker. I want to heal quicker. So, if I can make it to 30 minutes around the floor, I will do it. I don’t believe I’m alone in this attitude. I believe everyone who fights cancer has this can-do spirit. You either take cancer’s punches, or you punch it right back. . I’m thinking we all are willing to punch back and do our absolute best to try to come out on top.
Recovery steps with a stumble
Released from the hospital, I am recuperating at home. Actually, I’m recovering, trying to get as far down the road to recovery as possible. It seems to be paying off. In order to eat, I have to wait until I passed a physical milestone. That happened during my first walk inside the house. Our 1st floor layout is conducive to doing laps. Let’s just say that one of those laps was a bit ‘turbo-charged.’ So, I was eating things almost right away.
I had a little drain pouch that was attached to one of my five wounds on my upper abdomen. This is the receptacle for the excess fluid that the activity in that area would naturally flow. I was wearing this thing attached to me for the first 2-3 days. It was ‘dry as your granddaddy’s scalp’ to quote The Natural when the Whammer accused Roy of throwing spitballs. Nothing at all had come out, so I removed it.
I continued to do 30 minute walks around the 1st floor. They may been more like shuffles – no long gait here, but I’d get stronger each time.
I was given prescription pain killer to ‘stay on top of the pain,’ but I don’t recall ever needing it. I was managing it with Tylenol during the day. In short, I was doing really, really well with recovery. All those prayers and well-wishes were most definitely working. I wanted to tell everyone that I appreciated all of these thoughts and prayers because they worked! I sent an email out to my friends at work to bring them up on my great progress. Since it was October, the month I usually send out fun emails about the Employee Giving Campaign, I sent out an acrostic poem thanking them and using the letters BYE BYE CANCER to close it out. Then I lied down and fell asleep on the couch.
The phone rang and woke me up. It was Hartford Medical Group. It’s my surgeon who had told me that he’d follow up with me. I’m anxious and happy to tell him how well I’m doing. “That’s great.”
He then begins telling me that they got the pathology report back on all the tissue they had taken out. Going into the surgery, I knew they’d take out the prostate, some more nerves and tissue on the right side, and 2 lymph nodes close to the prostate, and maybe two more in the general neighborhood.
“Originally with the biopsy, we had seen the cancer with a Gleason score of 4+3, or 7. We found out that you have a more aggressive cancer. It had a Gleason of 5+4 or 9.” Gulp!
“When we took the prostate we also removed the seminal vesicles on both sides. They’re attached to the prostate, and they hold the seminal fluid. I thought I saw this during the surgery, and the pathology report confirmed it. The cancer had already spread into the right seminal vesicle.” WHAT!!
At this point, my ears were still hearing, but my listening (again) wasn’t quite attentive. My mind was off and running. I thought I had done everything right! I caught it as early as I could, right? Or did I?
The doctor had continued to tell me that because of what he observed with the seminal vesicle, he removed 34 lymph nodes, the usual suspects for harboring rogue cancer cells. All 34 had come back negative. Because of this newly ranked cancer, we’re going to have to watch it more often. This means more PSA blood tests than the usual for patients. Maybe 1 every 3 months.
This was tremendous news for me, but quite frankly, I hadn’t processed it yet. I was stuck on this aggressive cancer having a chance to leave my prostate and go elsewhere. My first question to the doctor was “If I had the surgery right away, instead of waiting 2 months, would we have caught it before it spread?” (In other words, was I sitting around too much instead of acting on it?).
“In my opinion, I don’t think it would have made any difference.” That was somewhat comforting. We ended the phone call.
At that moment I was extremely frustrated. I did everything right. I detected it early. Took care of it. But this cancer ended up spreading! I am home alone. And I loudly voice my frustration.
“You want to ‘f’ with me, cancer? You picked the wrong guy! I’m going to radiate your ass! You’re going down! I’m going to make sure your f’in ass gets fried! You picked the wrong m-f’er! I’m going to fry your ass so that you’d never want to come back! You’re going to wish you never entered this body!” I’m saying these words of bravado as tears are filling my eyes, and my voice starts cracking.
Like I had said, the news from the doctor was not all bad. Did the cancer spread? Yes. Did it spread to places beyond the prostate area? All indications say no. Tissue by the right side of the prostate? Negative for cancer. Lymph nodes taken around the prostate? Negative for cancer. Thirty-two (32!) other lymph nodes taken out of the area? All of them, negative for cancer. The only thing that was outside of the prostate that was positive for cancer was the right seminal vesicle, and that was coming out anyway.
What is the difference in treatments between having a Gleason score of 4+3 and of 5+4? I have to have a PSA test more often. That’s it? No a big deal at all!
However, before I processed all that above information, I was very, very concerned. I had the fear that I’m sure many of us cancer survivors had had. I did everything I could. I did it all the right way. This cancer keeps coming back! It’s for those people that I’m doing this 5K. I had the fortunate break of catching it in time. Many of us don’t get that break. On behalf of them, I thank you for your donation.
One more thank you for the support
Just a quick recap… I’m lying on the couch after hearing that I have a more aggressive cancer from the pathology report, and I am completely spent from ranting at cancer for the past 10 minutes. I was completely despondent. To paraphrase Dickens, it was the worst of times.
But as I laid down on the couch, I soon realized that it was the best of times, too. For soon after I had sent out my email that morning thanking all those for their support in helping me make great progress, I fell asleep. I was asleep while many of my friends had responded to the email. I was on the phone while some of them had responded. I was ranting at cancer while perhaps some were responding to my email. And while I was at that low point, I decided to check my emails.
“Great to hear, Paul! Rest up! Look forward to having you back in the routine again,” from Andy.
“I’m sooo glad things went well…Looking forward to seeing you…” from Mary
“AWESOME!!!! … You’ll be back here in no time!,” from Anna.
“Nice to hear from you. Get well,” from Shawn.
“That’s RIGHT. BYE BYE CANCER!...Good to be reminded that life is awesome” from Wendy
“Enjoy your rest time! … I will continue to keep you in my thoughts and prayers! .. You are truly missed already and you have only been out for a few days.” From Joann.
“Glad to hear you’re doing well.
Recovery is up next.
Early return to normal routine will be good for you.
At a boy. Job well done.
This experience will soon be last week’s news.
Next up: Return to work.
Excitement abounds as you return.
We’re really looking forward to getting you back.
So get in gear and get well soon.” (ie. GREAT NEWS) from Randy.
“I’m so glad to hear everything went well and you’re on the mend! Get lots of rest. See you soon!” from Lisa.
“Glad to hear all went well. Take care of yourself and take time to recuperate!” from Leueen.
“I am so thankful you are doing well. Prayers will continue,” from Marie.
“I’m glad all went well, and it looks like you are feeling better… My mom prayed her rosary for you at least once a day. She was very happy to hear the surgery went well, and she is happy that you are on the mend… No rushing back, follow the doctor’s orders,” from Chris.
“Good to hear! Thanks for the update, we are all pulling for you!” from Tony.
“That’s awesome news! All you can control is your attitude, stay positive!” from Robert.
“Great news, Paul and so glad everything went well! On to a speedy recovery!” from Karen.
“Thinking of you! “ from Jenn.
“I’m so glad to hear your surgery went well. Best wishes for a speedy recovery!” from Chris
“Thank you for the update and glad to know all went well. Will add you to the prayer list at my church.” From Norvilla.
“Linda and I have been praying for the best outcome for you and your family... God has our backs. He won’t fail us or never forgive us no matter what.” Then he recommends I ponder Matthew 6:25 if I get anxious. It’s where Jesus says that God cares for us more than the birds or the lilies. Do the birds worry about where they will get their next meal. Yet, our heavenly Father feeds them. Do the lilies toil or spin when they’re in the field? They grow anyway. What do you think our heavenly Father will do for us? A great passage suggested by Marty.
A smiley from Sue.
“Glad to see an email from you! Speedy recovery! I will be dancing for Zumbathon on your name!” from Arlene
“We’re all glad to know you’re doing great!” from Sue.
“So glad to hear you’re doing well.” From Kirk
“So happy to hear that the surgery went well. I hope you have a smooth recovery! My father also sends his best wishes!” from Tina.
“So glad to hear there were no issues with surgery and that you are recovering well!...Keep up the good work getting well and I’ll see you sometime soon.” From Bryan
“So glad to hear things went well. Our thoughts continue to be with you and for your speedy recovery!!” from Barb.
“How are you recuperating? Quickly I hope!... Take your time and rest up while you can!” from Lisa.
This support was EXACTLY what I needed. I scrolled through each message, got a little misty eyed, maybe a little smile. I felt the support and pull from all my friends, and it felt GREAT. My spirits were lifted tremendously. It truly was “the best of times.”
My first Post Surgery PSA test
Three months later in January, I had already gone to the lab to get my first blood test after the prostate had been removed. My prostate had been removed, so theoretically, there should be no prostate specific antigens in my blood. Instead of 4.1, the upper limit we want is 0.02. If there is anything higher than that, then we know that there are prostate cells floating around in my body that shouldn’t be. The only ones that do that are the cancerous prostate cells.
I’m fairly confident it will be clean, but one never really knows. Of course, my prayers continue. I am walking pretty well now. I no longer have any extra padding in my underwear. Things are progressing well. Just need these results to confirm that the Gleason 9 cancer did not escape and go elsewhere.
Funny how things happen. I have the Amazon Echo give me the readings for the Mass of that day. This day, I hear one of my favorites. Jesus is approached by a leper. The man says to Jesus, “If you wish, you can make me clean.” This echoes the prayer I’ve been saying in my heart. “Jesus, if you wish, you can cure me of cancer.”
Jesus, in the most tender response that I could imagine replies, “I wish it. Be clean.”
Later that day, I get the results back from the office. My PSA is lower than 0.02. It is so low that it cannot be accurately measured. “This result should be considered negative for cancer.”
All I can think was that was Jesus’ reply to me this morning. He wished it. I was clean.
So, I am doing this 5K race/walk. Just like that ‘best of times” moment on the couch, I feel tremendous support from all of you as I reached out to sponsor me in this event. THANK YOU for supporting all of us that have been diagnosed with prostate cancer. THANK YOU for all those who sometime in the future will benefit from your great generosity that you shared. THANK YOU for taking time out of your busy lives to read the reason why I am doing this event.
Lots of love,
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