Wednesday, June 29, 2016

Empathy is not always EZ.

I participate in a Facebook-based support group for prostate cancer sufferers, patients, survivors, and their supporting family, friends, and lovers. There have been many discussions of the symptoms and impact on the body of the cancer and the effectiveness and side effects of the various treatments. Side effects that often include urinary incontinence and erectile dysfunction (ED) formerly known as impotence. Everyone's journey through this often fatal landscape is wildly unique and different. Today one of the partners of a cancer sufferer posted a note that ED just didn't matter and implied that forum members should just be glad to be still alive and shut up about that issue. A couple of men (both suffering extreme cancer-related life-threatening problems) posted that, in their dire situation, sex simply no longer mattered to them. The original poster (OP in today's language) then congratulated those two for "being comfortable in your own skin and for having good self esteem and for knowing what a REAL MAN is." I found her words to be insensitive and hurtful, and did not immediately have the words to respond. 

A couple of other cancer-suffering men did chime in and post to the effect that she simply did not understand. One man went so far as to call her patronizing. I'm not sure I'd have used that word. Anyway, after some time pondering, below is what I posted in reply to her REAL MAN comment:

Thank you, Robert and Henry. I wanted to respond to Patsy but needed some time to think so that I could, hopefully, respond in a way that does neither diminish those with greater problems and suffering nor hurt Patsy for her lack of understanding and empathy while making it plain that her words were hurtful.

My dear wife and I have remained committed and faithful for over 48 years. We have raised a great family who are doing well and enjoying life. I am thankful for her and our children and grandchildren, for my life, remaining health, and capabilities, and I have great sadness for those, like [name withheld here] and many others, whose situation is really much more dire and difficult. My PC was originally diagnosed as stage 2 with a Gleason of 4+3 with “excursions to 5.” Twelve of fourteen biopsy cores were positive for cancer although my PSA had never been over 4 and all of my DREs had been unremarkable. The biopsy was recommended because my PSA went from 2 to 4 in a three-month period (followed because I did have BPH, and the PSA increase was verified with a follow up and a second lab). The RP surgery proved the cancer had spread outside the prostate capsule so my diagnosis was changed to stage 3. I have, and continue, to receive what, to the best of my ability to judge, is excellent medical care and I have excellent insurance. My oncologist, supported by post-surgery pathology, believes that all the cancer was removed. At six-months post-surgery, my PSA is ND. I do recognize that in many, many ways, I’ve been exceedingly blessed.

I have no idea how to communicate the loss that my wife and I both feel, other than to say that it hurts. Our hurt in no way diminishes anyone else’s pain. But it is real. We have benefited from joint counselling post-surgery. Depression meds (for both of us) have helped.

I am as “comfortable in my own skin” as I know how to be, take responsibility for my health where I can, and continue to work full-time now that I’m past my initial recuperative period. I provide for my family and provide emotional, intellectual, loving support for my family. I ride my motorcycle regularly. My youngest daughter and I rode our bicycles in a 20-mile fund-raising event for the American Diabetes Association. I’m training for my first 5K running event in support of funding for PrCa research. I try to be supportive to others through this forum and our local chapter of Us Too. I meditate daily and do yoga on non-running days. I share the housework and read to my vision-impaired wife. She and I do enjoy intimacy and I’ve tried to be a sensitive and giving lover within my current capabilities. But our loss still hurts. It hurts her and that hurts me. And, deep down, there are the fears voiced by Henry (Explanatory note here -- Henry voiced fears on Facebook that his wife would leave him for a more capable lover) —and I do not mean to slight my wife nor disrespect her in any way when I voice this. I believe that if you have not suffered the loss of something that, for your adult life, has been part of your being and part of what you could offer in a loving relationship you probably don’t really understand. And for that, you must be forgiven.

So, Patsy, what is a real man?  And how can anyone define that for any other person?

I await her reply.

Saturday, June 11, 2016

Tracking blog visitors is not EZ.

So, this morning, ClustrMaps tells me that my blog has had one visitor from Seguin, Texas, 10 visits in the past five minutes. What's that all about?

Fitness Trackers are not EZ.

Yesteday I noted that my FitBit Charge HR fitness activity tracker was behaving badly. Occasionally I would get no response at all from it. Other times it would display a stop-watch like display that I didn't even know it had. I tried to do a reset per the company's web site support but no change. Then I noted that a fully charged battery was only lasting about 2 hours vs. the 5 days advertised. This morning I called FitBit Customer Support at 1-877-623-4997. FitBit Customer Support was courteous and friendly, but didn't seem to really know any more about the device than I do. So, they are sending me a new one under warranty, which, I've been promised, will arrive in 7 - 10 business days.

Friday, June 10, 2016

Winter wasn't EZ.

TL;DR: Among the many things your body may need, oxygenated blood is rather high on the list.

I have, once again, begun the C25K (Couch to 5K run) program. You may note the word, “again.” The word is appropriate because I first started the program in early February of this year, but failed in that attempt. In case you are not familiar with the C25K program, I offer the following from the C25K Website []: “C25K is a fantastic program that's been designed to get just about anyone from the couch to running 5 kilometers or 30 minutes in just 9 weeks.”  There, they claim, “Josh [Clark] wrote the C25K program in 1996. Since then many thousands of couch potatoes have become runners because of Josh's work.”  As stated, the program intends to help get people up off their butts and into a better state of fitness. That goal is reached by providing promptings that lead the participant through an increasingly strenuous 30-minute-three-times-weekly exercise routine. It starts off being seemingly really, really, easy. The first day of week one includes a 5-min warm-up walk and a 5-minute cool off walk at the end, with short periods of walking and jogging interspersed through the other 20 minutes of the routine. Initially the walking periods are longer than the jogging periods. The C25K app on a smart phone (I use an iPhone 5) provides verbal and vibration prompts like, “OK! Let’s jog now.” and “Whew, now let’s just walk.” in a soothing and encouraging voice in the gender of your choice.

So, if it’s so easy (and as I completed Day 1 of Week 1 yesterday it did seem quite easy) why did I fail in February?  I’ve had a rough winter. I’ve written in an earlier post (January 31, 2016) of my run-in with cancer and the initial surgical treatment that I received. As part of my patient education, my oncology surgeon told me that among the side effects I should expect would be fatigue and shortness of breath that would likely last a “few months,” but would get better with time. The more I walked and exercised, he said, the more quickly those side effects would pass. So, by early February, still suffering from fatigue and shortness of breath, I decided to try the C25K. In my suburban San Antonio neighborhood February weather is often perfect for outdoors exercise and I’ve got a great around-the-block route of just over ¼ mile on flat land right at my front door (and observant neighbors to call 9-1-1 if I drop out); perfect conditions for a beginner. So I downloaded the app and spent some time configuring and getting to be familiar with its features. I bought some new running shoes and pulled some running shorts and a t-shirt out of my dresser. By golly, let’s do this!

And I could not. The five minute warm-up left me puffing. I could not sustain the first minute and 30-seconds of jogging. Before I had completed the first ¼ mile lap around the block, I was stopped, leaning on my knees, gasping for breath between gagging and hoping somebody would call 9-1-1.

A little background: By February of 2016 I was 65 years old. My BMI is greater than my doctors would like it to be by about 10 or 15% (at 5’ and (nearly) 11” tall, I weigh about 215 pounds which puts my BMI at about 30 to 31—right on the border between overweight and medically obese). I’ve never been a runner as it’s not something that I’ve found pleasurable. But, prior to my surgery, I was not exactly just a couch potato, either. I have always walked a LOT and enjoyed that. On travels, I could generally walk younger and thinner companions into the ground while touring places we visited. For several years I had been doing a morning routine at least 5-days-week that included about 30 minutes of yoga-like stretching and light exercise (I’ve even taken a couple of yoga classes – call me Yogi). I had been using a pedometer app on my phone to encourage and track walking for about a year. In fall of 2015, my youngest daughter, Jennifer, and I successfully completed a 20 mile bicycle ride as part of the Tour de Cure raising funds for diabetes research and treatment. So, not an athlete by any stretch, but not totally sedentary either. The recuperation from my December, 2015 surgery had put nearly all of my physical activities on hold. By February I had decided it was time to get active again, hence, the C25K. But I failed—after that first attempt at Day 1 Week 1, I could not get myself to try again.

Over the next few days and weeks, the fatigue and shortness of breath did not get better, if anything, it seemed to be getting worse. On a cool and blustery Saturday, while on a shopping trip with Glenda, I was unable to walk up a slight incline 20 meters from our vehicle to the store. Finally, by mid-March, I determined that there must be something other than the side-effects of the December surgery bothering me and made an appointment to see my primary care physician. After a cursory unremarkable exam and her review of my records, she said, “It’s been nearly 13 years since you’ve had a complete cardiology workup, why don’t we refer you to the cardio clinic and get that done.” So a week or so later, on the 22nd of March, 2016, off I went for my appointment at the cardio clinic. As is normal procedure for a medical appointment, my vital signs were checked and recorded. Then, as the first step of the cardio evaluation, I removed my shirt, laid back on the exam table, and was wired for an EKG. As the machine began to hum, I noted the technician’s eyebrows quickly raise, and she asked, “How long have you had atrial fibrillation?

“What? Never, that I know of. I had an EKG prior to my surgery in December last year and it was normal then.”

“Well,” she said, “You’ve got a pretty severe case of it now.”

A few minutes later I was visited by the clinic’s lead cardiologist. She explained atrial fibrillation (A-Fib) to me. Basically it’s when the upper and lower chambers of the heart are not working in the proper rhythmic order. This diminishes the heart’s ability to supply the body with enough oxygenated blood. Symptoms: Fatigue and shortness of breath. Huh. Some people can feel palpitations in their chest, and, if it gets severe, tingling or numbness in the extremities or light-headed feelings. Because the blood pools and is not moved properly, clotting can develop and that can be fatal. So A-Fib is something you don’t want to ignore, and, this diagnosis goes a long way toward explaining why my fatigue and shortness of breath had only gotten worse rather than better after my surgery. So, what’s next?

After a thorough review of my health and medical history (including the very complete cardio workup from 2003) the cardiologist prescribed a procedure called an electrical cardioversion (CV), where the medics basically stop and then restart the heart with electric shock much like that delivered by an automated external defibrillator (AED) device. The procedure is done as an outpatient day-procedure and the patient must be on blood thinner for at least two to three weeks prior to the procedure to prevent blood clots (and lawsuits) that might occur with the CV. So I was prescribed twice-daily oral doses of 5 mg of apixaban, told to confine myself to “gentle” exercise—but to walk as much as I was comfortable with, and scheduled for the CV procedure at that same clinic on April 29, 2016. In the meantime, the doctor said, if you feel tingling in the extremities, light-headedness, or sever palpitations in the chest, get to the emergency room as quickly as you can. The date of the scheduled CV was significant, as Glenda and I had planned to leave on or about the first of May for a three-week long trip visiting family across the Intermountain West. If the CV went well, we could still go. If not, the family could all gather here in San Antonio.

Crank the clock hands forward to Sunday, April 24, 2016. On the way home from church, I told Glenda, “I am feeling truly exhausted, probably just tired from overwork on the yard Saturday. When we get home I don’t want to eat, I just want a nap.” Which I got, but after sleeping two hours I didn’t feel any better. We retired early that night and I slept nearly 10 hours but got up Monday morning feeling, if anything, worse. By now all of my long muscles were aching—surely an artifact from all that Saturday yard work. I went to work anyway as there were things I needed to get done. By 9:30 AM in my 72o F. office I felt like I was freezing. I had the shivers so bad that my gut was shaking internally. I thought to myself, “Well, it’s warmer outside (this is San Antonio, after all) I’ll go out and walk a bit, stretch my muscles, warm up, I’ll feel better.” Walking outside did NOT make me feel better. In fact, I noticed that I was feeling a tingling in my fingers, felt a little bit light-headed, and could feel the palpitations of my heart racing in my chest. Let’s see, what was it the cardiologist said, if I feel….or….or, wait, I’m feeling all three symptoms at once! So, being the sensible fellow I am, I drove myself the 11 miles or so from my workplace to the hospital’s ER.

At the ER, the triage nurse did not ask me to have a seat in the waiting room. She seated me in a wheelchair and immediately took me to a treatment room where I was stripped and gowned and, again, wired for an EKG. The EKG tech asked if I knew I had A-Fib, and I was able, this time, to say that, yes, I did know. Reviewing my medicine list, he asked if I had been taking my blood thinner per instructions and I answered in the affirmative. “OK, he said. We’ll get you on a gurney and a monitor and I’ll have the cardio doc on call come see you soonest.”

Lying on the gurney, under four blankets, I was nearly asleep when the cardio doc came to see me. After a few cursory checks and discussion, he said, “Well, you seem stable. Let’s send you home now and we’ll see you back on Friday morning in the cardio clinic for your CV.” With that he left.

Less than five minutes later, he was back: “We’ve changed our minds. We are going to admit you overnight and do the CV here tomorrow morning.”   OK. So, I’ll be spending the night in a hospital for only the second time in my life. The first was last December when I had the prostatectomy.

During the admission process, the staff finally got around to checking all of my vital signs. Wait, repeat that temperature. Let’s use a different thermometer. 104.8 o F.! Note, reader, that my normal is around 97 o F. As a result of the fever, the medics decided they needed every possible diagnostic sample to look for the cause of the fever so I was stuck, swabbed, drained, and swiped everywhere you can think of (and a couple places that surprised me). I was moved to an isolation room on the ward and sedated with a saline solution IV and there I drifted off to blissful sleep.

Shortly after awakening in the morning, the entire cardio doc team showed up in my room. My hospital is a teaching hospital so there was a cadre of students, interns, residents, fellows, and attending physicians. The attending physician introduced the team and told me, “We have good news and we have bad news.” Great.

“Give me the good news first—I need some good news.”

“The good news is there is nothing wrong with you that would have a negative impact on the CV. We will still do the CV this morning, probably around 9:00 AM.  The bad news is that the tests confirm that you have influenza-b and it will take you 10 – 14 days to really feel well again, no matter what we do.”

Another note for the reader: I had been administered a flu shot in October of 2015. I have not generally made it a practice to get the flu shot, but happened to be in a clinic one day when they were being administered at no cost, so... Alanis Morissette would see the humor in the situation as it developed.

So, true to their word, I was taken for the CV by way of rolling gurney 9-ish. I was prepped by a nurse-practitioner with the connection of the necessary IV tools for administering the sedative and the shaving of my chest. The electrical terminal pads are adhered to the chest in front and on the back just opposite rather than paddles to the left and right as with an AED. Shaving minimizes pain later when the terminal pads are removed. With some additional explanation, then introduction to the physician and team who would be administering the CV, I received some sedative through the IV and drifted off to sleep.

Now, for those who have never been anesthetized, it is not like regular sleep. When you sleep, upon awakening you have a sense that time has passed. You may not have an accurate sense of how much time, but you will know that time has, indeed, passed. When you awake from anesthesia there is absolutely no sense of time having passed. It is as if you had simply not existed from the time you lost consciousness until awakening. Death must surely be something similar. On that day, when I awoke, still achy from the flu, the very first thought in my head, fully formed but unbidden, was, “Wow! I have not felt this good in weeks!” I almost wanted to jump up and run around. It is absolutely amazing what a difference having a decent blood supply to your entire body makes. I highly recommend it!

The rest of the recuperation was unremarkable. During the day, after the CV, an echocardiogram and other tests were done to evaluate my heart health. At the end of the day, the docs told me that all was well. The heart and valves seemed very good for my age; no artery blockages noted. The hospital staff sent me home later that same day. Glenda and Derek’s family came to take me home, and they were a welcome sight! My only new restriction was to wear a breathing mask to reduce the chance of spreading the flu. Within a few days I was back at work. At the advice of my cardiologist, I bought a FitBit and started tracking my walking – 4,000 steps per day, increasing to 10,000 as a goal now. And yesterday, I, again, started the C25K challenge. This time I was able to complete the full 30 minute workout without undue distress. The app tells me that I covered 1.92 miles in the 30 minutes. My FitBit tells me that I ran for 24 minutes, burned 293 additional calories, and had an average heart rate of 124 bpm during the exercise. I feel pretty good about that. I also did my morning yoga routine today for the first time in ages and ages. It wasn't pretty (it never was or will be), but I got through it.

So, that’s why the word “again” is important in my lead sentence. And, as usual, shows that nothing truly is ever easy.

Friday, March 4, 2016

My election decision has been made more EZ.

I did not watch last night's Republican candidate debate from Detroit, but I'm sure hearing a lot about it via water cooler talk, Twitter, Facebook, and various news outlets. One topic that seems to be on a lot of minds this morning is, "What was on Ted Cruz' lip?"

I'm much more concerned about what was on Donald Trump's mind and what came out of his lips!

I have a new life goal: I want to live long enough to cast a vote against Donald Trump.

Sunday, January 31, 2016

It's not an EZ road to recovery.

I've joined a support group for prostate cancer victims on Facebook. I also attend a live support group that meets once a month. Here is a description of my experience that I have shared with those groups.

I'm 65 yo, reasonably healthy but about 10% over ideal weight. I had the DaVinci radical prostatectomy on 3 December 15. 12 of 14 biopsy cores had been positive, Gleason of 7 (4+3 with "excursions" to 5) and some evidence of extra-capsule malignancy. Both the radiation oncologist and the surgical oncologist (and second opinion) agreed surgery was the best first choice for me, as it can be followed by radiation if not fully successful but, for some reason, it's less desirable to do surgery if the radiation doesn't fully work. I spent two nights in hospital, had next to no pain, painkillers for only two days post-discharge. I took the month of December off (slept  and went back to work 1st workday of January. Will go back for F/U with first post-surgery PSA early February. The surgeon was able to do "nerve sparing" surgery on one, but not both sides, of the prostate area. They took the seminal vesicles and samples of the lymph nodes as well. Pathology after surgery was good with all "clean edges" but it did show some extra-capsular malignancy which was removed. At this point, I'm finding that I still have excess fatigue and tire VERY easily. The incontinence is my big gripe, very demoralizing, and I've not seen any improvement, yet. I had a catheter for one week. Since it's removal, if I'm standing or walking, I'm leaking. I can hold it no problem sitting or laying down. Coughing, sneezing, laughing no problem unless standing. I'm using "prompted toileting" using the timer on my iPhone to remind me to void every hour while awake. I am receiving rehabilitative care once a week with biofeedback on the Kegels and electrostimulation for the pelvic floor muscle. I find I do better on holding the urine when I'm fresh than when I'm tired. I've been prescribed daily Viagra and issued an expensive pump, but there's no sign of life there yet. My wife is demonstrating the meaning of patience. A deciding factor for me: every Dr. I consulted said side effects are initially worse with surgery but they get better -- with radiation, side effects are minimal up front but a significant number of men so treated have onset of incontinence and impotence later on and the side effects then get worse over time and never get better.

Sunday, December 6, 2015

It's more EZ at home

Well, here I am at home. Prostateless post-surgery and wearing a catheter. while I have been prescribed some pain killer, the pain is not really bad. The catheter is uncomfortable, but it should go away in about 10 days.  I have a long list of do and don't items. Get lots of rest. Walk a lot. Avoid stairs, etc.  I may be back later for a bit more discussion, but now that I've walked a bit, I feel the need for some rest.