Saturday, March 15, 2014


September 24, 2013 - Studley, Virginia

Today begins the next chapter in my book of cancer. Cancer is my astrological sign and until about a year and a half ago the word was benign. I know that in certain settings it strikes fear into the heart. Who amongst us hasn't felt a strange lump or bump, or a new pain in a new place, or seen a darkening circle of skin and not immediately jumped to "THE" conclusion. It's such a strong word that many times it's whispered.

Curious about the derivation, I found this: Cancer, both the disease and the astronomical constellation, derive from the Latin cancer or cancrum, meaning crab.

The astrological sign, of course, was given to the star formation that was said to resemble a crab and the disease was so named by the ancient Greek physician Galen (129-200 A.D.) who noted the similarity between a certain type of tumor with a crab as well--the swollen veins around the tumor resembling the legs of a crab. (Thanks to the anonymous contributor for that.)

OK. I kind of like that. I'm not really into astrology, though I was told when I was much younger by someone who didn't know, that I must be a cancer, as I had so many qualities in common with the sign. Who knows?

A word of caution. When discussing medical issues of this sort it is sometimes necessary to be a little more graphic than usual. So if you are uncomfortable reading about male biological systems between the knees and the stomach - turn away, now.

I - Something's not right.

Blood in the urine can be quite unsettling. Having had this experience at least 3 times in the past (you would think I could be more accurate than "about", sorry) I optimistically chalked it up to an infection, excessive sporting activity, or perhaps just something that happened as you got older. A lot of surprises are in store for the young. After a particularly strenuous run while living in Saudi Arabia many years ago, the river ran red, and after nearly fainting I saw our local doctor. It was just the "normal" shedding of the lining of the bladder that occurs sometimes. I was fine. The other couple of times were linked to the passing of kidney stones, the male equivalent of giving birth. The drugs don't touch the pain. I dutifully made an appointment with my primary care physician, who put me on Cipro and strongly suggested I make an appointment with a urologist. Everyone thinks they have the best doctors, I know I do.

Urologist - the very word sends shivers up the spine. Dr. Szobota is a great doctor and a good guy. After examining my x-ray he informed me that I had bladder stones. Huh? In fact, he continued, it was a simple problem to solve. I have learned that simple is all in the eye of the speaker. According to the good doctor, he would simply "go up and take a look" with a jack hammer, camera, laser, light, and myriad other tools of his dastardly trade.

Without asking, I knew the "one-way out" channel was about to become a two-way four lane highway. As I wiped the sweat and tears from my face he explained that while he did his exploration (called a cystolitholapaxy) I would be under the influence of a very nice drug cocktail and would neither feel nor remember a thing. He would do all the work. True to his word, I awoke from the trip feeling great, with Kathy at my side smiling and the doctor explaining that he had detonated a golf ball sized stone to bits and removed it all. I always thought they used fruit metaphors (perhaps a plum sized stone), but I got a jock for a doc. Cool. It wasn't until I started to dress that I noticed a tube running from inside my body to a bag on the outside. The next day Mr. Foley's invention was ceremoniously removed by a very nice nurse named Linda (the rest is a blur) and I left the office feeling pretty darned good. He would see me in 3 months for a check up. He had treated the symptoms and wanted to make sure he had solved the problem. Drink more fluid was the standard by which I would now live my life.

Ninety days later I confidently strode into the now "not scary" Urology center. My urine test showed the presence of some crystals, oh my, and another x-ray was ordered. Yup. Two more small stones had formed in the bladder during this short amount of time. The reason for this, even given the significant amount of water ingested and passed, was that the prostate gland, that little miracle of evolution was enlarged (common for someone my age) and did not allow the bladder to empty entirely, creating the ideal environment for stone formation (think rock candy or pearls). Just a bit about the prostate. Was this the best architectural solution? Why locate it so that it surrounded the little tube that let you pass fluid from inside to outside? Every time it gets angry or annoyed in the least it has the ability to squeeze that little tube (the urethra) shut. And it's purpose? Think of the saliva glands which produce the pillow drool as you get older. Any more detail than that you have to go research on your own. There are plenty of good pictures and descriptions online.

A similarly "simple solution" proposed by Dr. Szobota was to drive that highway again this time with a roto-router type device that would enlarge the pathway from the bladder to the outside world. My mind immediately went to one of those machines used to bore the chunnel. This little procedure is known as a TURP - Trans Urethral Resection of the Prostate. Similar procedure to the first for the patient, but this time the catheter would be at least a one day and possibly two day fixture. We scheduled it, and were just on the cusp of the event, when my blood test indicated an elevated PSA (4.5). As every guy knows, this is the antigen that indicates prostate problems, most benign, one not. The TURP was cancelled, and in it's place a biopsy was ordered. I had mixed feelings about this. The biopsy was less invasive and did not require a catheter however it was diagnostic rather than curative.

I had the same set of nurses and the same operating room. This time I was going to enjoy the experience more, paying attention to the little things. I was interested and questioned everything wanting to understand. I told them that this was another routine day in the office for them, but for me it was a special event. They all joked around with me and we were having a good old time until the doctor came in. They take their business very seriously. The biopsy itself is a piece of cake. Same nice drug cocktail. No pain, no strain. The entry point for the sampling gizmo is farther back on the anatomy (if you are interested look it up - or think colonoscopy), and 12 bits of tissue are taken with a needle device, from 12 different areas of the prostate. A pathologist looks at the samples and categorizes the cells on a scale of 1-5. 5 for the most abnormal cells, 4 for the second most, etc. For each of the 12 nodes a score is calculated. The most difficult part of this test is awaiting the result which takes about 5 days.

II - The Diagnosis

You know there is going to be bad news when they don't phone with the results and instead ask you to come in for a consultation. The next Tuesday afternoon we sat with the doctor while he explained that I did have prostate cancer - in one of the 12 nodes ... and the score (called a Gleason score) added up to 6. I felt so bad for him, having to deliver this news. He had obviously done it many times, but it can't be easy. Hearing the word and knowing he was talking about me didn't have the shock value I had expected. Maybe my upbringing, or faith in modern medicine, or having Kathy by my side left my thinking, all right what do we do now? The decision of what to do about it rested entirely with us. We all agreed that a "watch and wait" posture was appropriate, and a second biopsy was scheduled for 3 months hence.

Skip ahead three months. I arrived at the Urinary Center with the swagger of a senior in high school. Used to the procedure and friends with the nurses in the operating room, the second test was even less stressful than the first. If things stayed the same a yearly biopsy might be in order and regular monitoring of the PSA level would suffice between biopsies.

Scheduled for the end of December we had to wait until the next year to learn of the result. The good news was that the cancer was still only indicated in one of the 12 nodes, the bad news was that the pathologist had categorized the cells as types 4 and 3 and added together that made 7. A Gleason score seven is the magic number, like sitting on the top of a picket fence, or walking on the razor's edge. Was this an indication that the cancer had become worse? Was it possible that the needle had hit a different spot on the second test, and would have scored the same if tested earlier, so really nothing had changed? Dr. Szobota said he could no longer recommend doing nothing, as the GS7 forced his hand, action should be taken. What to do? What to do?

III - The Options

You have three basic options.

Do nothing - This is the watch and wait process or active surveillance. Even though not recommended any more we could certainly do this; monitoring the PSA level and having a biopsy once a year. Everyone and everything read indicates that this is a slow growing cancer, usually. Worst scenario is that the cancer spreads to other organs while we are waiting and watching. Hits us with a sneak attack.

Cut out the prostate - Hmmm. I didn't like the first word the first time Dr. Szobota said it, and it hadn't changed it's impact. The Virginia Urology Center has the latest equipment and Dr. Szobota would perform the surgery using a robotic tool called Da Vinci. We have such faith in him that removal would be an acceptable alternative. Keep in mind that the nerves that provide pleasure as well as pain run alongside that little gland, and a disturbance to the nerves might have significant side effects. There are other side effect potentials as well, none of them pleasant. Read more online if you have the desire.

Radiate the prostate til it dies - Dr. Szobota scheduled an appointment with Dr. "TJ" Wallace, a Radiological Oncologist. He said "TJ" was THE BEST and told us frankly that either procedure has the same efficacy. I asked if he would feel bad if we picked radiation (we feel very loyal to him), he laughed and said no. It was really a matter of which we preferred.

Dr. Wallace was great. We spent an hour and a half with him and he could not have been more gracious and generous in sharing information and opinions. You need data to make decisions and we really wanted to know if it was "safe" to wait til the end of summer to make the decision. One node, Gleason 7, yes there is a risk, but he quantified it for us. Life is full of risks. My PSA had not increased over the past 6 months, still a low 3.4, so we decided to watch, wait, and decide.

IV - The Decisions

An old story which I have told many times to whomever will listen goes like this:

Before seat belts in cars, whichever of us kids were in back (I have 3 siblings) used to stand against the front bench seat while my dad drove. Or, if lucky, one of us would lay on the shelf behind the rear seat, where now you find radio speakers. Back in the day this little deck could hold a kid of 8, or a set of 5 and 3 year old cherubs. The thought of us becoming projectiles should Dad hit something occurred to none of us. By the time seat belts became standard equipment we all had our licenses.

I remember the first time I bought a car with seat belts. Every time I went somewhere I had to decide if it was dangerous enough to wear them. A trip to the next town or over a bridge off the island - yes, but maybe not to the local grocery store or gas station. There was a push to legislate the mandatory wearing of seat belts. I believed they made me safer, but didn't want the government to force me under penalty to wear them. Plus there was still the dilemma of when to buckle up.

The subject was quite controversial back then consuming many hours of talk-radio time. Driving back from work one afternoon I heard the one line that changed my entire feeling about the subject. One of the people calling into a show said something like: "It's the decision process that creates the stress - make up your mind EVERY time you start the car to wear the seat belt, even if only going down your driveway to get the mail." I was about 20, and it changed my life.

I have tried to apply that since. Get the data, make a decision, move on. If the data changes then revisit the decision, otherwise don't waste any energy second guessing.

The cancer was not going away. It could only stay the same or get worse, and all the data shows it will get worse over time. If you live long enough something else will probably kill you before it does, unless, of course, you have the more aggressive type. How do you know that? Waiting increases the risk. Waiting for the next PSA result or biopsy result creates stress. Every twinge in that area, even if unrelated, sets off alarm bells. We had mulled over the data, read the literature, talked it out.

I returned from a walk one early September morning, and recounted the little life episode I had encountered on Studley Road. A good sized turtle was trying decide when to cross the road. They are slow, and often don't make it. It could feel the cars approach and each time one did it retracted it's head into it's shell. I thought that this was a pretty silly and dangerous maneuver as the cars were going to keep on coming and the shell offered little protection. I wondered about whom I was thinking. Over breakfast Kat and I decided ... the prostate; let's nuke the little bugger.

It felt good to have the decisions behind us. The rest was execution.

V - The Treatment

Tattoos. For years I've tried to gently let the kids and grandkids know that I saw tattoos as body graffiti; a blight against a perfect, natural landscape. Today I have three.
Three small dots, one on the belly, and one on each hip, that will allow the sophisticated machinery at the Bon Secours (Good Help) radiology center pinpoint exactly where my prostate gland is. Those were inked in a few days ago, and a foam cast was made on which my legs would rest. This ensured that each day my body would be in the exact same position.

Once that is known beams of electrons will bombard the little guy from different angles. When they hit the prostate they will stop the ability of the cells to divide. And we all remember from basic anatomy (don't we) that cell division is called growth. Cells in our body are always dying off and others divide and take their place. After 8 weeks and a bit the cells in the prostate gland will not be able to divide. It will fail to function anymore.

So today I get the first (of 43) treatments that will kill the gland. Strange feeling, knowing you are submitting to something designed to kill off a part of you that has gotten out of control. I have such faith in both Dr. Wallace, and the center (a first class operation) that it is a non-issue. I'm not even nervous, more excited and interested in learning the process. I imagine this will become old soon, the first few times all new and fresh, then a routine.

Within minutes of arriving at the clinic both Kathy and I were escorted back into the radiation center. Crystal and Cathy (Cat)were our guides, Layal and Diana assisted. They could not have been nicer to either of us. They were empathetic, took their time and explained everything to us. When undergoing treatment it is best to have a full bladder, so I had dutifully consumed the 20 ounces of water long before I hit the parking lot (a scant 23 minutes from the house). As I lay on the table, and with a vanity sheet over my loins, my thoughts were of how surreal this all was. The ladies were chatting about the procedure while I slid my trousers (I had gone commando for the occasion) down toward my knees. With practiced precision I was perfectly aligned via lasers, and an ultrasound image played upon one of the computer screens at my side. Images were studied and minor adjustments were made. It was important that I not move .. at all .. and I did my best to be still.

When everything was where it was supposed to be the ladies exited the room and I was left alone lying face up staring at a very serene cloud painted ceiling. I really felt alone. It was just me and the future. The machine went into motion, and I was amazed at how deftly it moved around me given its size and bulk. It stopped 7 times and for some number of seconds each time it stopped I heard the familiar sound of an x-ray machine buzzing away. Could I feel anything? The beams going through the skin and tissue and organs was real, the sensation only in my mind. In fact I felt nothing. Except for my bladder. Entirely unrelated to the procedure I was undergoing, all that water I had drunk had made it's way to my bladder. I was just on the verge or doing something that had not occurred since second grade when the door opened, the table lowered and I was herded off to blessed relief in the bathroom.

Day 1 completed. 42 to go. I will try not to think of it like that, a doomsday clock clicking away but enjoy every encounter the best I can. Upon our return home, I made the round trip walk to the post office in near record time, had breakfast/lunch and a cigar and was very grateful for all the people who had made it possible. None more so than the lovely woman who read to me outside while I happily played Subway Surfer on our new Kindle.

September 25, 2013 - Studley, VA

Routine? Not quite yet, but pretty close. The drive is easy and so far predictable. Today I drank the last of my water after entering the building and it made all the difference in the world. I was comfortable on the table, and today I could relax and observe more. The ladies operated with the same precision - so smooth it was like they do this every 15 minutes, every day of the week. My anxiety level was near zero. My mind drifted as the machine did it's job. I thought that it might even be possible to use this 8 minute period for some transcendental meditation. The sounds of the machine faded to white noise and Cat was lowering the table before I was aware she had entered the room.

After the treatment we met with Dr. Wallace who said that my "pictures" looked great, everything was going wonderfully, exactly as expected. I felt just as great until he said that he wanted to show me the original C-T scan pictures where four (4) stones were clearly visible in my bladder. We could do that next Monday when we have our regular weekly progress meeting. How to wreck a morning. He will consult with Dr. Szobota about what to do, but it will all work out in the end. My goal is to dismiss this latest news until it is meaningful relative to the course we are on.

I am so grateful for the dedication, professionalism and expertise of all the people who are taking such good care of me. Layal (Arabic for "night" I believe) is so outgoing and sweet. She was telling us that her interest in medicine came as a result of all the help her mom had received by medical professionals that she really wanted to find a way to pay it back. I think she has already made a great contribution.

Not sure how often I will write on this blog now that I've emptied my head. Probably only when something strikes my fancy or something changes. Until then I'll keep Churchill's motto in mind:

October 3, 2013 - Thursday - Studley, VA

It's been a week. This little (handball sized?) gland is not a happy camper. It feels as though I might have an alien being living inside me, able to exercise it's will over my well being whenever it wishes. I can't blame it. For 8 of the last 10 days it has been shot at by a stream of destructive electrons trying to do it harm. My anthropomorphization may not be exactly appropriate since it is (part of a) human. I know it doesn't have free will and a brain, but I am imagining it does. Allow me to drift back to last week.

By Friday afternoon I was looking forward to two days of not getting into the car and heading to the center. It had nothing to do with the facility or the people - my experience there keeps getting better. However, every trip to the bathroom was becoming an adventure. For anyone who has had a UTI, that startling feeling that makes you think you are passing a mixture of molasses and broken glass had become the norm. And then of course there is the "sneak attack" routine of extreme urgency that occurs randomly but has to be taken seriously, and then produces but a thimbleful. They are a thrill. We had read about these particular side effects but they are "normally" encountered around week 2. Was my prostate more advanced, or less?

Come Monday morning, after two days of the little fellow not being under siege, things were back to normal and I felt good as I approached the door. I felt confident it was an anomaly but would mention it to Dr. Wallace, an FYI sort of thing. The good doctor was under the weather so I had the pleasure of meeting Dr. Lang Liebman (great name), who informed me that everything looked like it was progressing nicely. Everyone had told me that she and Dr. Wallace were two of the finest radiation oncologists in the southeast and I accept that easily. I mentioned my experience with the "terrors" and she demonstrated how the prostate surrounds the urethra by taking her pen and gripping it in her fist. Under treatment the gland may go into spasms, showing us by squeezing and releasing the pen. Each time she squeezed her hand chills went up my spine. She told us that many people found a couple of Ibuprofen tabs would reduce the inflammation and make things easier. We stopped at CVS and bought the 250 tablet bottle.

Our coterie has grown by three. Daniela, another RTT in training, Julie who is there some days, and Judy who has been on vacation. A real southern gal, Judy made me feel right at home in minutes, like I was just visiting. It is a wonderful mix of personalities, and I find the short amount of time we get to spend together as they line me up not sufficient to get to know them better. For them I am a 10 minute slice of a non-stop stream of patients, for me they are a great addition to our retired lives. As the only Yankee in the room we are able to share a little diversity of thought. I told them about waving to everyone as we walked to the post office, and they said that was natural in the south. Then I asked why everyone but young blondes waved back and that got them laughing. Being in a field where your goal is to help people attracts a certain type, I think. And I am glad for it.

The walks to the post office are relaxing and the weather has been perfect. It's a nice way to relax after the morning session and before breakfast. I talk to my prostate during part of the walk, a firm believer that positive thought prompts the brain to send healing chemicals down there to work their magic. The same way it triggers whatever it is that makes the blood clot when you cut yourself. Just in case a few Ibuprofen help, a lot. I'm a wussy, I'll admit it, and hate pain of any sort. Kathy tells me not to go to the "Honey, would you mind helping this old guy with cancer" well too often. It quickly loses it's effect. I'll try not to.

So, Friday is already upon us and I'm feeling great. I actually feel like I have more energy, and want to get more things done. I'm wondering why that is but have decided not to spend too much time trying to figure it out. Life is full of mysteries. Maybe that is why.

October 4, 2013 - Friday - Studley, VA

Done for the week, and feeling quite wonderful. I'm looking forward to two days off, mainly because showering and shaving become optional (oops). I can't say enough good things about the Bon Secours Cancer Institute and the care I have received there. Somehow the doctors and technicians have been able to make me feel comfortable while undergoing a life changing experience. These are good people, professional and competent and it is heartening to know that they are out there every day doing what they do, making the world a better place.

I took this picture today with Daniela and Layal welcoming me to the table. As you can see it has been prepared with the foam cast upon which you place your legs in position to line up the tattoos with the lasers embedded in the walls. The orange ring near the head is offered if you wish to hold it, to make sure you keep your hands out of the way of the beam (I eschew it). The table slides backward under the machine and once you are positioned correctly and the team is out of the room, the lights are dimmed and the head of the machine rotates around your body. Before you know it, the lights come up, and it's time to head off to make the most of the day. It can be a pleasant experience if you let it, I think.

Two weeks into it, and I realize more each day how blessed I am.

Talenti - Black Raspberry Chocolate Chip

October 11, 2013 - Friday - Studley, VA

Well, another Friday; where do the days go? We meet with Dr. Wallace each Monday and this one past he told us that he was pleased with the progress, and asked if we had any questions. Since he asked I described the novel adventure of going to the loo and asked if the grunts, groans, burbles, spasms, etc. were normal. We chuckled internally when he said those were side effects normally seen in the third week of treatment (early as usual) - I wonder what surprised are in store for the fourth week. He sent me to LabCorp to drop off a sample to check for a UTI. Anyone who has had a UTI will know the symptoms, and anyone who has not does not want to know.

Before I forget here is a picture of two of my attending caregivers: Crystal on the left, Julie on the right. They are just plain wonderful:

The results came back negative, which is great. Let's go for one thing at a time, please. So the doc recommended Ibuprofen (an anti-inflammatory - I didn't know that and take very few meds), and prescribed a cute little pill called phenazopyridine. It is supposed to coat the lining of the little exit tube and relieve some of the pain. One of the glorious side effects is that it turns your pee a bright, bright orange which adds a new, visual element of pleasure to the process. At first you just stare in wonderment and think about what a great trick it would be to add it to someone's meal (here honey, a new vitamin for you) and wait for the shriek. Not sure how much it is helping but it surely has added a great diversion. BTW if you want to try it yourself, it's sold over the counter as AZO, I think it's harmless, and worth a laugh.)

My mom really got upset when any of us kids used the more common word for flatulence or said "shut up" to each other. Those were hot button issues with her. So we avoided them and it has left an impression (as things MOM tells you, do). So much so that as a father I passed along this teaching to my children. It was therefore with amusement that we found our little 7 year old grandson, Jonathan, had not been schooled in this delicacy. While babysitting as his parents went away for a week, we helped the kids with their homework and one of his assignments was to use certain words in a sentence. The word was "clench" so I offered: "I had to clench my buttocks to keep from flatulating." He got it right away. It was hilarious as he could not stop repeating the sentence for the next two days, then we got out of there.

Where was I? Oh yes, so anyway one of the side effects of radiation is flatulence and I mean a lot. Normal? It may be but I didn't think this was. It did bring a smile to my face though as I played Subway Surfer in the waiting room and used the jet pack with a plume of colored smoke exiting it as it flew through the electronic landscape. It got me wondering - given the effects of the phenazopyridine, could it be that I might be leaving an orange trail behind me?

Enough of this silliness. I will leave this day with one last picture. Two of the nicest people you will meet: Judy on the left, Cat on the right. Their grace and caring are inspiring.

And to celebrate Friday: Talenti - Caramel Cookie Crunch

Saturday, October 19, 2013 - Studley

Finally got a picture of Diana, our student radiologist. I will try to get this posted back in the narrative in context but wanted to include it before I lose it. The last flower in the bouquet I see each morning.

Take a look at a picture or drawing of the human bladder sometime. Quite an interesting organ, it's shaped like a little round balloon, fed from the top by ureters (one from each kidney), and with an outlet at the bottom. I know this better than I ever wanted to because two doctors and one x-ray technician have shown me real pictures of mine. The CT scans are amazing. Little slices of the body in black and white from different angles. If the doctor allows, I'll get one and post it. My bladder looks good, except for what appears to be 4 (count them) solid white spherical objects resting on the bottom wall, right by that little exit pipe. Tough to say exactly but they seem to be about 4 to 5 mm in diameter.

Each of us knows but may not be aware that the bladder has some complimentary forces acting upon it; muscles contracting, it filling and emptying, gravity etc. During radiation, try as they might some radiation hits both the colon and bladder. Neither organ is particularly happy about this it seems. The thought is that my bladder is doing it's best to expel these foreign bodies from it. I can tell just by looking that that will not happen naturally. They are too big, the tube too small. Imagine trying to push a marble through a drinking straw. Or better yet ... I have an image in my mind, an old one from an Arnold Schwarzenegger film (Total Recall) where he extracts a bulbous object from his nose.

If you have never seen it, here you go. You can right click and open in a new tab. It certainly left an impression on me.

Ouch. It's not going to happen naturally. I think I need a crush and flush.

It's been a tough week. It appears my bladder tries to exorcise these demons once every two hours like clockwork, day and night.

The days have lost their shape. They used to be smooth, and sine-wave like. (With apologies to Tempur Pedic).

Now they are jagged and rough. (With no apologies to Jackson Pollock, who I still don't "get" but can relate to this particular painting.)

I'll know more Monday when I visit my old buddy Dr. Szobota.

Enough negative ... some positive stuff: The ladies at the center are still taking good care of me and we have a laugh a day. Friday was the last day of rotation for both Daniela and Diana (D squared as they are lovingly called). They are moving on. I sincerely wish them the best with their next assignments, sure they will make fine radiation technologists. Lovely young ladies.

Had a great walk to the post one day, and experimented with some lump crab meat sauteed with diced tomatoes over jasmine rice after chatting with a local friend who described that totally southern delicacy called "pantry soup."

We spent a good part of Friday volunteering at the Atlee Library semi-annual book sale. We like to set up the rooms, my specialty being audio/visual. It is amazing how many people donate books, cds, dvds, books on tape, etc. More amazing to me is how many we sell - it appears there is still a strong demand for tangible reading, or listening material. And the price is right; at 50 cents for a paperback and $1 for a hardcover or DVD or book on tape.
And so many good-hearted people participate, taking the items that do not sell to local charities, jails, retirement homes, or in one case sent to our soldiers in Afghanistan. They do it out kindness and caring.

That helps give some shape to my day.

And of course being a Friday ... Talenti - Belgian Milk Chocolate

Friday - October 25, 2013 - Studley

Milestone week. As a dear chat friend from England told me, at the end of this week I'll be more than half way through the treatment, having fewer in front of me than behind. It helps to keep things in perspective.

And what about those pesky bladder stones? They are still in there partying each day and night, and my imagination envisions them rolling around and bouncing into each other trying to find creative ways to spend their time. I'm getting silly about this, but find these fanciful flights a way to cope with the reality of the thrice hourly stabbing pains associated with their existence.

The doctors are trying to minimize the discomfort with a blend of new medications and are working on dosage and timing. I trust them completely. I know they have both my short and long term success uppermost in their decision process. One joy I do get is bombarding them with that little orange dye pill three times a day. When it's time for Dr. Szobota to go up and get them I imagine he will have no problem finding them - it is dark up there and I know he brings his own light, but even so ...

Oh, and this week I had the pleasure of being introduced to two new members of our team; Lauren -

and Lindsey -

both VCU students making the rotations. I love to see the way Cat, and Julie, Judy, Layal and Crystal guide them through the process. There is a real sense of caring and it gives faith to the idea that this latest generation will take good care of the world they are inheriting.

A little event and story I think is worth sharing. I had commented (not complained) that the cold gel that is squirted onto my abdomen so that the ultrasound instrument would slide easily gave me a little polar bear thrill. Oh, they said that it was supposed to be warm and since then it has been. They listened and cared. It reminded me of a story that the company nurse (Scottish with a great accent) told me about 40 years ago. In nursing school she and a fellow student giggled about something during a clinical session with a patient.

Immediately after the class the reprimand was quick and strong. Their teacher asked them to consider every patient that they ever encountered as their mother, or father, spouse, sibling or child. She asked them to treat them with that level of caring. My nurse friend said that it had a profound impact on her and she started each day replaying that line in her head.

One last picture: Dr. Timothy Jude Wallace (another great name). After 5 weeks of being under his care it is no wonder that he is regularly voted (by other doctors no less) as a "Top Doc" here in Richmond.

One last thing - Talenti - Caribbean Coconut (will this be their favorite?)

January 3, 2014

I haven't written an update until now, because I have been searching for the right tone. Added to my general desire to keep this upbeat and light, the months of November and December have been a bit of a blur, partly drug induced, so there is also a question of accuracy. It may be therapeutic (for me, not you) to reflect on what it all means as well. Some events change your life, others change what you think about life and living.

Let me try to catch up from where we left off: If you look at the little picture on the left the small white dot in the darker circle in the center is at least one of the stones, the others might be hiding. The morning of October 31st was beautiful and sunny. The doctors had come to the conclusion those 4 little bladder stones would have to be dealt with and without delay. Doctor Wallace agreed to suspend the radiation treatments while the stones were surgically removed. On Halloween morning (with everyone dressed as doctors and nurses), I awoke from my little drug treat finally free of the little tricksters.

November 1 - a day later, but at least a new month, and another milestone. And speaking of stones, why was I still experiencing difficulty and pain? I could hardly wait to get back to all my friends at the radiation center to continue along our path, but it was clear this was not going to be as smooth as we had all hoped. A quick trip to the Urology center and Dr. Foley's invention (and some Percocets) relieved the immediate pain and pressure. But the schedule clearly had been altered and we were now on a road less traveled.

Roads less traveled have always appealed to us however that is not the case in terms of medical issues. No reason to go down any of these one in a thousand lottery type lanes. But sometimes that is not your choice.

Do you turn away the moment the phlebotomist inserts the hypodermic syringe into your arm for a blood draw ? I do. I don't want the mental image seared onto some brain cells. I wonder if that would be called semi-denial. I mentally turned away from the first half of November. I can not describe any of the wonderment that must have taken place in the first 17 days of the month. What I do know is this:

The stone extraction combined with the radiation irritation led to catheterization, which is impossible to deny. It's just plain uncomfortable having the device in place and there is a level of care required to maintain a sterile environment when handling some of the logistics. When told it would have to remain in throughout the remaining radiation course it was really disappointing. If we remained on schedule it was only until thanksgiving. Only. And a little aside for some of the guys out there; maybe it can be ignored on occasion? I found it difficult to do as we made accommodations for hygiene and a modified procedure at the radiation center. And for you fellows who have on occasion thought how convenient it might be to forgo trips to the bathroom while doing something more interesting (like watching a football game, or driving a long distance), immediately banish that thought; you don't want to get what you wished for in this case.

The daily routine was modified to accommodate my new toillette, bag switching, plugging, driving, drinking, etc., I found I was tired by the time I got home and crashed on the couch with a Percocet (every four hours) to relieve some of the discomfort. I'm not a drug seeker, a baby aspirin a day normally suffices, but not a martyr either and this combination semi-synthetic opioid/acetaminophen tablet did take the discomfort away.

And that is how I spent the first half of November, not really anywhere, putting in my time. And that to me is a crime, spending life "putting in your time." Things were about to change.

November 18, 2013 - The Radiation Center

Meeting with doctor Wallace after the regular treatment, I mentioned that I had a strange pain in my left calf. It had begun Saturday morning after sleeping with my left leg bent at a 90 degree angle. He poked, prodded, and said that we should get to the imaging center which was conveniently right next door in the same building. We had to wait until 11:00, and both Kat and I were relieved when they took us a few minutes early.

In a dark little exam room Kat watched as our technician expertly scanned my leg from groin to ankle. We all knew the outcome before it was delivered. Blood clots, known as DVT (deep vein thrombosis) had formed overnight. They are known as "silent killers" as there is a risk they will travel to your lungs and cause a pulmonary embolism. I have too much knowledge of this condition and I was scared.

Wheelchaired from the imaging center, to the radiation center, Dr. Wallace had me in our car in minutes, and Kat had us at the emergency room at Bon Secours Memorial a scant 15 minutes later. Immediately the triage nurses moved me to an exam room where for the next 15 minutes there was a flurry of excitement, blood drawn, monitors hooked up, questions asked and answered. Had I waited too long? Should I have told Kat first thing on Saturday morning when I knew something was wrong? I had read about David Bloom (the CBS reporter) and his sudden death from DVT and it really struck me that it takes but a moment for life to change dramatically.

Two hours later, my ER doc told me to take the little red pill offered, and that I was being released to my primary care physician (PCP). I was to stop at his office on the way home and pick up some samples of a drug called Xarelto and obtain a prescription from him. Thankfully they also provided a nice writeup on what to do, and not do, and required follow up. I didn't want to move, and certainly not bend my leg. I remember feeling so sad that I had put Kathy through this worry.

Life goes on, doesn't it? The rest of the world hums along oblivious to all the individual crises we go through. My circle of concerned caregivers were so solicitous I was beginning to feel guilty. The next day the gals at the radiation center (normally wonderful, now super wonderful) made sure I was comfortable on the table with the minimum of movement. Dr. Wallace checked in, glad that I had an appointment that same day with my PCP .. Dr. Tim.

It was a great comfort to meet with Dr. Tim. He clearly laid out the concerns, risks, and strategy for dealing with the DVT and we left feeling a burden had been lifted. Just take it easy, no stress, take the medicine (a six month course it looks like), and beware of the fact that the new drug is a blood thinner and not to have hip or knee surgery .. no problem with those instructions.

And so it went through the remainder of November ... right through Thanksgiving (which we postponed, and not because we were not giving thanks ..we do daily), but we were trying our best not to vary a routine that seemed to be working. My last radiation treatment was now scheduled for December 2, so very close. What I did not realize was that it had become very easy to do the minimum, take my Percocet, and wait for the catheter to be removed. One day blending into the next. Much too easy.

December 2, 2014 - Graduation day

Each Friday I brought in a different flavor of Talenti ice cream for "my" extended family to try, and Kat provided the occasional tray of cookies - the college interns particularly seemed to enjoy those usually trying them before I was even off the table. It was our very small way of telling them how much we appreciated all they had done for us. They are a marvelous group of dedicated professionals. So I was surprised when they presented me with a gift:

I loved the "official" gold seal in the corner. So I had completed the course. Following our last meeting with Dr. Wallace, we shared hugs all around and made an appointment for 5 weeks hence, just for a follow up. It felt a little strange leaving that day, after it had been such an integral part of our daily routine. For the group I was leaving a new patient was probably slotted into my appointment time. Life goes on. Now just a week to go to get the catheter out, and just 5 to 6 weeks to fully recover from the radiation. I had noticed as time went on that I did feel a little more fatigued but that was to be expected. We are on the mend.

December 9th 2013 --- C-day - Void Trial

One day after our 13th wedding anniversary and it was finally time for this little annoyance to be removed. It's an interesting procedure, not just a yank and done sort of thing. There are two tubes in one (like Doublemint gum and I apologize if you now have that annoying jingle playing in your head), one in, one out. Upon placement the in tube is used to blow up a little balloon near the end to hold the device in the bladder. The nice nurse hooks up a sterile solution bottle to the in tube, fills you up, deflates the balloon and removes the device, gently but with determination, and in a perfect world nature should take care of voiding what was introduced. Thus the term: void trial.

So home we went, on trial, and it was only a couple of days before I was back at Virginia Urology (gratuitous picture I know, but I needed some color on this page ... too many words) for installation of another Foley catheter. I had been found guilty apparently. Was I having separation anxiety? All I can say is that the disappointment was palpable. I refilled the prescription for Percocet and headed back to the couch.

The period from early December until the 15th is a complete blur to me. I had been trying to watch my diet for the past month, to get plenty of nutrition with the minimum of bulk Look up the side effects of Percocet some time. It binds you up, and that is the very last thing you want if you have a catheter. but somehow had dropped from about 165 lbs. to a 45 year low of 143. I had no appetite, and everything tasted awful. Nothing was appealing. Again, if you think you need to lose a few pounds and loss of appetite and taste sounds enchanting ... be careful what you wish for.

I looked at my notes and found that I was taking medicine about once every 4 hours, probably needing it or not. This had to stop and it did. I resolved not to take another pill (except the blood clot medicine and a benign bladder muscle relaxant).

We tried another void test again on December 16th, and this time the trial lasted only a few hours before the verdict came in. I was found lacking and had to return and have another catheter installed. Something in there was being very stubborn. The good doctors suggested we give the internals a chance to heal and leave the catheter in for a month.


Whatever, I just wanted to feel normal again.

December 17th - Dr. Wratchford .. .my primary care physician, was again a source of comfort. He patiently explained to us the issues yet to be faced with the blood clot situation and was glad it was Percocet which I had dumped cold turkey instead of something that would cause more severe withdrawal issues. I hadn't thought of that, but certainly will in the future.

The best I can say about the last half of December is that Kat and I enjoyed a visit with her mom and brother on Christmas Day ..the first time I had been out for a drive of that length (all the way to Charlottesville ... an hour and a half away - woohoo) in months. It was great to see them and chat with Kat's sister and brother-in-law in New Zealand on Skype. Before we knew it the New Year rang in and we were off and running (well almost) with anticipation of a better year ahead. We sincerely try not to let negative thoughts play any role in our lives.

We settled into a routine, enjoying each others company, me having a nice cigar, reading aloud to Kat while she painted the grandkids' Christmas boxes and concentrating on positive thoughts and activities (like eating balanced meals again). We were beginning to enjoy the simple pleasures in life that we had so obviously taken for granted. Lesson learned. My mind was clear and clearly my mind was on how fortunate we have been.

January 8 2014 Wednesday

We met with Dr. Wallace (my oncologist) for the 4 week post radiation checkup and all is going OK. Fatigue effects after radiation can last from 4-6 weeks and I was beginning to feel just about normal. He was disappointed (as were we) that the catheter was still in place, but feels that is probably justified; giving the bladder a good month of non intervention to let it heal. Time does that if you believe the maxim. Between the operations and the radiation, and the medications, the whole area down there is probably pretty upset with us all at this point.

We saw the gals from the radiation room; Layla, Judy and Crystal. What nice women they are, so upbeat and smiling. We miss them, so Kat made sure she brought in a batch of little brownies with Hershey kisses in them, just to let them know we were still thinking of them. Cat has retired, bless her. She certainly deserves it and we wish her the best.

We have begun walking again, not the 2.2 miles to the post office, which we miss, but taking it slowly up and down our street until we have about 1/2 mile worth of distance. So far my leg feels no effect of the blood clot. I'm beginning to think that my key to recovery is to remain vertical for as much of the day as possible. We have plenty of activities to keep us busy, it's the nights that can seem long, particularly if sleep eludes.

On this particular January 8th at about 2200 we heard a small explosion outside (something not uncommon in the middle of the woods where hunters play but NOT at this hour), and a second later the house was pitch black and silent. Thank goodness for good flashlights, and gas fireplaces, and the stockpile of water (the electricity goes, the well goes). Our guess is that one of the pole mounted transformers went, and within three hours Virginia Dominion had the power back on. No harm, no foul, just a diversion.

January 12, 2014 – Sunday - Studley

So we are now officially up to date (shocking) and hopefully this has not been too gruesome to read. It has been a challenge to accurately describe what has been going on without getting into information no one wants to read or think about. For anyone considering radiation therapy for prostate cancer, my various complications were extremely rare, "one in thousands" according to my doctor who has handled thousands of patients. Add the DVT (my own fault) and you have the ingredients for the perfect storm. Most sail through with a little fatigue, some minor side effects and come out feeling great a month of so after the last treatment.

I have certainly learned a lot in the past few months, had a lot of time for reflection and appreciate my life, and my wife and the generous and good people who inhabit this land with us. Hopefully by the end of this month we will be as much back to normal as normal can be. What a trip.

VI - Searching for Normal

The Ides of March, 2014 – Saturday - Studley

Where to start .. or hopefully, where to end. This may be the last post on this subject since we are hopeful the rest of the recovery will be in the noise level, not worthy of note. So since last I wrote there have been a few milestones passed.

The major milestone was the removal of the Foley catheter on January 20th followed by another dreaded void trial. This time however I screwed up the courage to ask that I be shown how to self catheterize and promised that if need be I would do it myself. My logic being that if I didn't offer and had problems I would be right back in the office that afternoon with another Foley and knowing the drill, for an unspecified amount of time. Typically they want you to try the self-routine there in the office the first time, so that they can make sure you are doing it correctly, but I ended up convincing them that I was capable of going solo given good directions.

The nurses agreed, checked with the good doctor, and I was given a 10 minute lesson by Debbie (she is so good), a bag of samples, a diary and admonition not to let my bladder fill too much and to self-C (picked up the lingo pretty quickly) at least twice a day, morning and night, and at noon time if needed. Also given a contact for a mail order company (180Medical - a SUPERB customer focused company), to get more supplies.

Of course, my fervent hope was that things would flow like back in the good old days and the samples would gather dust in the bottom of the closet. For men it seems, the idea of inserting ... well you know ... is tantamount to the fear of public speaking in the nude for other people. I know I'm generalizing, but I've yet to meet a guy who greets the thought with anything but a clenched jaw and crossed legs. To have someone else do it to you is one thing, but to willingly do it yourself quite another. And I had been shutting off those incessant catheter commercials that run every five minutes on the cable channels: get free samples; try the polished ones, or the travel size, or the small pocket sized. I begged them to stop.

After one and one half months of not having to do anything of significance, my bladder figured it could stay on vacation a while longer. That first day was one of praying, massaging, and cajoling (yes you can talk to an internal organ). No matter what I did or said it was balking at giving up the goods. There were two options ... me or the Emergency room. It was close to midnight when I took the first sample out of the bag, made a sterile field, peeled back the plastic, opened the lube packet, washed my hands twice, had the antiseptic alcohol wipes ready and approached the moment of truth.

Then I realized I had to look down and watch the process. Remember, since insertion of the Foley back in early December I had done everything "down there" without looking. Showering, dressing, etc. I did not want that mental image. New ball game. Remembering the old instructions from putting together all those kids toys in the last millennium, tried to concentrate: insert tab A into slot B. Easier said than done when your hands are shaking like they are attached to egg beaters. Then the words from the commercials started playing through my head; ours are painless, smooth, polished, no sharp edges ... whoa. Does that mean my free samples from the clinic were not?

Skip to the end of the story. I followed Debbie's instructions to the letter, the experience was MUCH less traumatic than I had imagined, painless but some discomfort, and the relief was immediate. Having done it once, the next time was easier, and I was feeling pretty proud of myself. Over the next three weeks I found that I only had to perform this procedure 12 more times before the resultant output (which you measure) had dropped below the minimum acceptable to discontinue. Since then there has been steady improvement and very little stress. A plug for 180 Medical. One call to them, they secured the prescription, did the insurance, suggested a mix of devices so I could find the most comfortable one, and mailed a 30 day supply to me which arrived in two days. A plus!

We kept our regularly scheduled appointments with both the urologist and the oncologist. First Dr. Wallace at the radiation center: my PSA has dropped to the lowest level since we've been measuring it. Interestingly, as the prostate cells die off they "dump" their contents into the blood stream so a PSA number higher than zero may continue for a year or more. Next appointment: April. With Dr. Szobota, the urologist we did a flow test (never knew these things existed, but for those who like metrics and cool graphs, highly recommended), which revealed that I was doing OK and my next appointment would be in 6 months. How about them apples?

So normal has become watching my intake and output, watching my nutrition (my weight is slowly climbing back up to the mid 150 level where I want it to stop), and getting some exercise. With the weather turning nicer, we have begun our walks to the post office and back. What used to take 33 minutes now takes 36 but that's slowly improving as well.

It has been an experience. I have learned a lot about myself and others. In no particular order:

All the people in the medical profession who provide such great care go mostly unnoticed ... until you need them. When you do the realization hits that they do this every day of their working lives and have a great, positive impact on so many.

It was nice to overcome some fears. They were all in my head and the reality was so much better than the imagined.

In the early days of the DVT when confined to the couch with legs elevated, Kat had to go out one day. She was thinking clearly when she unlocked the front door, in case there was an emergency (I had my cell phone) and someone had to get in. I wouldn't have thought of that.

The body and mind are amazing. During this entire time I have been cold/flu, and every other possible ailment free. Not so much as a stomach upset.

Percocet and I don't get along. I am not the addictive type, but it was easy to get into that routine of not feeling anything. I do not want to do that again, and it was not worth it.

Friends and family may find it awkward to communicate. When they call the first question is naturally "How are you feeling?", that is normal. But no one (or very few) want a detailed rundown of what you are dealing with. And I certainly did not want to relive my situation over and over again. I found that if I encouraged them to tell me what wonderful things are going on in their lives my spirits brightened immediately. I must keep that in mind when I'm doing the calling.

There is a special shiver that runs down your spine when someone calls you a cancer survivor, or says you HAD cancer.

And finally I can't thank my wife, Kathy enough. I know the sickness and in health part ... but she goes above and beyond. A great care-giver and seemingly totally selfless. I admire her tremendously.

So that's it. What a ride. We have had some family visit, and looking forward to visiting them. Also some travel plans are in the works for June, and possibly a trip (heading west for a change) in the fall. Life is good. And I am thankful.

1 comment:

Unknown said...

Your style of writing is easy to read, informative and leaves me looking forward to the next installment. My prayers are with you as you undergo this treatment.