Hip Bladder Covid Trump, Oh My!

On my birthday one year ago:  I was fit as a fiddle, working out, riding my trike, playing tennis, hiking up Juneau's biggest mountains, rowing my boat Io, planning on a future that would include grandkids (okay, Adelie will have to start liking children).

As I turn 67 this Sunday I can ride my trike.  Yeah!  But I walk with a limp, my shoulder is compromised, I can't hike, I can't play tennis, and I am less fit because I can't do the aforementioned activities.  And I have bladder cancer!

Hip Pain and Replacement Surgery

My pelvis had been causing me pain since 2011.  It finally started to get serious: stab of pain every time the heel of my right took my full weight as I walked, stab of pain every time I compressed my right knee towards my chest, every time I put my right foot on my left knee.  Much of the time I was able to hike, bike, play tennis, run.  Oddly, walking and standing were difficult and sometimes lying down was painful.  I was definitely not 100% but at the same time definitely not debilitated as so many people  are that I spoke with who had a hip replacement.  

January, 2020 I decided to seek medical intervention.

 X-rays and MRI indicated hip and pelvis pretty messed up.  Chiropractor said it was arthritis. My femur ball had turned into a pencil and mangled the surrounding cartilage, according to orthopedic surgeon two.  Steroid injection in February and by March hip was feeling pretty good but it wore off soon afterward. 

Did a fair amount of hip abductor strengthening over the course of two months via PT prescribed by orthopedic surgeon One.

Hip felt pretty good most of the month of April with a few notable exceptions.

May hip not bad beginning of month became quite bad by the  end of the month.  I also noticed I had adopted a cautious attitude towards any kind of movement mentally "hamstrung" by fear of incurring pain.  This means I was beginning to alter my gait in anticipation of pain. This is bad.  Biking is the only activity which is mostly pain free.

Hip replacement June 5th by surgeon two.  Surgeon said my hip muscles were "really tight."  He really had to struggle to get at the femur.  To this day I try to understand whether this is the cause of my incredibly slow recovery from the hip replacement surgery.  Did he shred my hip muscles in order to get at my femur?

The next five days in mostly persistent pain, hip stiff and sore, constipated but loving the painkillers giving me really great sleep. Riding stationary bike really easy. My whole right leg, down to my ankles, is swollen.  I have a pronounced "female hip."

The PT exercises are exceedingly painful and difficult.  In retrospect I wonder how much I set myself back with this early attempt at rehab.  Surgeon told me over the phone that really active people always try to do too much.  This may be partly due to my PT want to be aggressive.  I just remember how with my ACL repair the philosophy was "get that knee moving as soon as possible" and thinking of stories I have heard of people sort "locking up" because they didn't get the surgery part moving.  

Stopped the painkillers and the pain skyrocketed affecting a variety of places in and around my pelvis.  Ironically, the pain is pretty intense in the exact same spot which prompted me to get surgery in the first place.

Period up to 6/18.  Lots of pain.  Blood in poop and blood in urine.  Lots. Pain while peeing (why is this?)

After stopping the big gun pain meds which were giving such good sleep and such great naps I entered a terrible phase of insomnia going two weeks with an average of 2.5 hours of sleep each night.  I was ready to commit sepuku - seriously!

Went from using a walker to two crutches to one crutch to a single trekking pole.  Can't really stand full weight on right leg, can't walk without a limp without a crutch, can't walk up stairs without assistance, can't do clamshell exercises.  

About this time began to feel pain in the upper sartorius muscle and/or the tensor fasciae latae muscles.  These were the primary inhibitor of my walking normally.  I believe it remains the primary reason I can't walk without a limp even after more than three months post surgery.

I've been dedicated to doing exercises for my hip:  lots of bike riding, elliptical, stair stepping, rowing machine,  treadmill.  I assume this is good for my heart and must be keeping my legs somewhat fit but it never seems to change the sartorius muscle.

Had to quit PT on 7/14 for three weeks since I had bladder surgery.

9/13/20  Oh, it's my birthday.  I do get stronger every day and my range of motion is quite good.  However, it is a serious bummer that I cannot walk without a limp and cannot walk pain free.  I feel the key is to loosen up/heal the sartorious muscle.  How did it get into this state, anyway.  I'm doing lots of stretching specifically targeting the sartorious muscle and tried one session of dry-needling targeting the abductor.  I didn't notice any difference but will try another one this Tuesday.

I think I should get another MRI to see what is happening with my hip/pelvis region.

Just returned from a strenuous stationary bike ride followed by lots of stretching, both the abductor and sartorious muscles followed by walking on a treadmill.  I actually had almost no pain in the sartorious muscle or the abductor for the first time since hip surgery, meaning I can almost walk without a limp.  This is the biggest and best milestone since surgery.

Not so fast, not so fast!  I keep forgetting how incredibly slow this whole recovery is.  Every morning I wake up to a very stiff and sore hip.  Today 9/15/20 I got another dry needling and some new exercises and stretches.  They are designed to strengthen my hip abductors and stretch the sartorious muscle.  In retrospect I was concentrating entirely on strengthening my abductors but they were not strong enough to enable me to walk normally without engaging the sartorious muscle. So the sartorious was trying to help out the abductor but this was inappropriate and thus causing pain in the upper sartorious.

Shoulder

When I was 15 I developed fairly severe pain in my right shoulder.  What was notable was there were certain motions and positions of my shoulder that were excruciating.  I could achieve these certain positions without pain only through following a circuitous path of motion or by using my left arm to perform the motion.  I had no recollection of any type of injury to precipitate this.

I was able to manage this pain over the many years since. Until a few years ago.

The fly machine, bench press, and overhead press machines I needed my left arm and shoulder to be able to do the exercises because there was too much pain in my right. Although I could serve in tennis, overhead smashes were really painful. Eventually, even just forehands became painful. I could do okay with a two-handed forehand and backhand.

By January 2020 the shoulder pain was too too persistent and intense to ignore.

Got a steroid injection from Garcia 2/5  It instantly felt better and was like 95% for about two weeks and then the pain seemed to slowly come back until 3/10 the pain was as bad as ever.

Did quite a bit of PT on my shoulder for about two months. I can't say that it made any difference.

The jarring from simple running causes my shoulder to hurt a lot. Sleeping is often difficult because so many positions cause my shoulder to scream. It hurts when I walk with three pound weights straight out in front of me. There was an excruciating pain in my shoulder when simply laying down in the MRI machine for 15 or 20 minutes. The MRI indicated 7 to 10 mm tear in the supraspinatus tendon.

My shoulder has lots of clicking, crackling, snapping and popping like there are little pebbles inside my shoulder. Pain when swiveling my torso with weights held close to my body. Pulling up my pants was painful.

I have both sharp pains when I put shoulder in certain positions and a dull ache that is present all the time.

5/15 Got a second injection, this time from the back of my shoulder. Garcia said he can do arthroscopy to fix the tear and clean things up, remove spurs, etc.

If I did the arthroscopy I would need to have my shoulder in a sling for six weeks and it would be three months before I could do regular stuff.

Over the next couple of weeks the shoulder felt better but not nearly as improved as following the first steroid injection.

I tried a bunch of tests of shoulder functionality. Some positive, some negative.

Since hip surgery and bladder surgery I have done no PT on my shoulder and no exercising of my upper body. I have become quite weak in my upper body.

Bladder

As noted above I had lots and lots of blood in my urine following hip surgery. Three urinalyses confirmed I had RBC in my urine. I saw the local urologist 7/8 who confirmed, via a very painful cystoscopy, "you have bladder cancer."

Later that day this is what I thought: "Prognosis is not good.  Only 75% bladder cancers survive 5 years.  The good thing is 70% survive 10 years.  The thought that I have a one in four probability of dying within five years is very disturbing."

Last night, 7/9, I was overwhelmed by this realization that the odds are against me reaching 80.  I was determined to reach 90 to ensure I was a parent for Adelie and a companion for Missy.

I seem to be peeing frequently.

I was, and am, angry.  I want a good reason for being physically and mentally superior in health, virtuous, honest, always striving to do the right thing for humanity and the earth, and my name taken randomly out of a hat, like in the “Hunger Games,” and chosen to die.  Just like that.  10:00 a.m. happy, healthy, long and bright future.  11:00 a.m. going to die in less than five years.

I don’t think cancer victims die gracefully.  It’s not five happy and fulfilling years followed by a quick exit.  It’s more like two relatively good years, though accompanied by pervasive unpleasant, maybe painful, cancer treatment, followed by a rapid decline – losing weight, hair, energy, etc.  Maybe I’ll need the bladder removed and have to walk around in a large diaper.

I have come to accept death, just not in five years.  Oh, and of course, there is risk of infection from the surgery.

Last night my dreams were disturbing and caused me to lay awake with completely novel and unpleasant thoughts racing through my head.

Thursday 7/16 Surgery

Mike found the polyp in a bleb or pit lining the bladder forming its own little vesicle.  Like a bladder within the bladder.  This looks really bad to me as if the polyp is growing out pushing out into the surrounding tissue.  He also reported seeing a number of “satellite” polyps surrounding the original polyp.  This does not sound good at all to me.

Every time I moved I seemed to set off a “bladder spasm” which was an urgent, urgent need to pee, which when I actually peed was incredibly painful. This seemed to occur every 20 minutes or so throughout the day.  

I went to the ER around 10:00 p.m. and two nurses began forcefully flushing my urethra with 50 ml bursts of saline over and over again for about 20 minutes.  The pain was about 9 on scale of 1 – 10.  I could see dozens of little blood clots had been blown out.

Thursday 7/23 Biopsy Results

I have Ta which is high grade but stage O cancer.  The Immunotherapy using BCG is recommended – one per week for six weeks followed by a month or two rest and then three more weeks, once per week.

Early August the peeing frequency was declining and the pain also.  I was still walking around with this feeling someone had taken a file to the inside of my penis.

8/21 Very suddenly I returned to the high frequency of peeing and exceedingly painful.  I had to get up one night 10 times to pee.  As always, very little comes out.

Outside tip of my penis feels raw.

9/14  I have had four urinalyses now all of them say I have RBC and some say WBC also but none say I have bacteria.  So I have been given antibiotics twice and then twice told to stop taking the antibiotics.  I've been taking a bladder relaxer but don't think that has changed anything.  I went two and half weeks with the high frequency peeing and intense pain while peeing.  I began drinking prodigious amounts of water passed a total of five blood clots during this period each time was the most painful of all.  After the fourth blood clot, for the first time, I was able to pee without intense pain.  Unfortunately, the last few days the pain has returned, although maybe a pain level of six or seven instead of a nine.

My conclusions: drinking lots of water helped flush out the blood clots, the blood clots were the source of my intense pain each time I peed.  To me, it seems like a bad sign that I continue to have to pee a lot and the pees are painful.  What does this mean?

We postponed the first immunotherapy because of concern I had an infection - or because of the pain I was experiencing, or both?

I am most frustrated because I show signs of an unhealthy bladder (frequency, pain, blood, low level pain all the time) and no one seems to care.

The urinalyses:

8/25 Clear, High RBC, no bacteria, normal WBC

9/1 Cloudy, High RBC, no bacteria, high WBC

9/9 Clear, Low RBC, low WBC

Covid

The Covid pandemic has ruined everyone's lives, I should not complain, but it certainly hasn't been any fun for me or anyone else I know.

Trump

Day to Day

9/18/20

I described elsewhere how disastrous the first BCG infusion was yesterday.  Nurse tried to insert a "16" catheter and failed and then tried the "14" catheter and failed.  Urologist able to insert it, squirted in the BCG, said, "See you next week" and left.  My pees the next two days were the most painful sensations I have ever experienced.  Thankfully, very short.  Nurse Ashley thinks it was the BCG that caused the burning.

It would be fair to say I have now lived a life of three and a half months of pain.  We could call it "The Summer of Pain."  The hip pain is slowly diminishing.  The penis pain is slowly growing.

My days are dominated by my struggles with hip pain and rehab and penis pain and my bladder cancer.  I have little energy or time for anything else.  Is this living?  I am staying with Diana at her house in Lafayette.  She is very generous sharing her home, her car, her kitchen, her life with me.  Boulder is warm, often hot and sunny - kind of a nice change from gray and rainy Juneau.  Boulder is also very smokey and, of course, phrenetic.  I miss my own home, my family in Juneau.

Most of all, I miss my former life.  Free of pain, able to jump up and do things: play tennis, go on a hike, go swimming, rowing my boat.

Of course I miss the Covid free life.  Everyone is struggling with that so I cannot complain.

Half of America is experiencing a shortened life span due to the era of Trump.  Again, I can't complain; those people are suffering just like me.

The part of my existence I have control over has shrunk.  There is so much less I can do.

Bladder cancer could kill me.  The death would not be quick.  It would be a slow and painful decline.  If I completely ignore it, I might be able to live as if I have no cancer for a couple of years. 

But as I fight the cancer, I am in so much discomfort that every day is a chore.

Death doesn't frighten me.  I have lived a good life.  I feel strongly that I owe my family more.  More of what, though?  Most elderly people become a burden to their children sooner or later.  The children are relieved when their parents finally die, especially if they are non-functional for years and years.

I can't imagine Missy and Adelie are enjoying hearing me complain day-after-day about the pain I am in.  It saps their energy, too.

If I can beat the cancer, though, I might lead a satisfying life and provide some benefit to my family.  So, I shouldn't give up, yet.

This treatment is so abusive to my poor little penis, though, even if I beat the cancer will I be in pain forever?  Will there ever come a time when the cancer is quite manageable - a cystoscopy every six months with a yearly TURBT and the rest of the time I am free to live like I did before?

9/21

I am paralyzed with depression/stress/anxiety.  I want to go home to Juneau and my family and friends. Diana is so good to me.  She has a nice house and I can do what I want, come and go, taking her car whenever I feel like it.  But, it isn't my home.  I feel trapped.

9/22

It was stressful driving to the PT appointment today.  I really don't like the frenetic traffic.  I just sense everyone is on edge.  I miss Juneau where driving even to DT is no big deal.

Brian did all sorts of things to my thigh and hip today.  I guess it helped as I am very close to walking without a limp.  When he was done I sat in the Diana's car wondering what to do with myself.

I drove to the Pearl Street Mall and walked the length East to West.  Not particularly interesting but I slowly acquired a sense of detachment and relaxation.  It was very nice.  Walking back I decided to just sit on a bench and do nothing.  That was also nice. I laid down and took a quasi nap.  It was hot.  

I then drove to the mouth of Sunshine Canyon and hiked up, then scrambled up to "Hanging Rock."  I was tentative and a bit nervous but I was actually doing some bouldering.  And the hike up was just fine.  I now know I can do any kind of hiking/climbing I want in Juneau.  On the way down I noticed a side trail and took it up the canyon.  It was long with a gentle grade.  It was nice.  

I was seriously dehydrated drove to 29th street Mall looking for Jamma Juice which was gone.  Stopped at King Soopers for chocolate milk.

The point is I felt pleasantly alive and in control of my life.  Like I could do things that were generally fun.

I am reminded, once again, that moving, being active, brings me joy and satisfaction.  I am like a shark.

I feel for me, it is much preferable to wrench myself out of depression through experiencing agency than through medication.

I want to gain happiness by moving, going places, though I know a good conversation can really lift me up, also.

It isn't easy for me to pull myself out of depression.  I just want to hunker down and do nothing but sulk.  I need to be able to break out and get moving, doing something.  Like going on a long bike ride, or a hike.

If I am ever wheelchair bound I will be suicidal.  

I feel certain my bladder cancer will return, sooner or later because it is an aggressive cancer.  TheTURBT procedure was seriously unpleasant.  Wearing a catheter for four days and emptying a bag of pee and blood strapped to my leg, bladder spasms every 10 minutes, and needing to be irrigated to flush out 20+ blood clots.  And the pain, and the peeing.

My worst nightmare would be doing a second cystoscopy in Colorado end of October and finding the cancer has returned.  This would mean another TURBT in Colorado meaning not leaving Colorado until perhaps end of November and then returning to Colorado in February for a third cystoscopy.  This would also indicate the BCG had not worked.  The bright side perhaps would be I could do a gemsidibine in Juneau between November and February before the third cystoscopy.

How do I do cystoscopies when Saltzman is gone?  I must do one every three months.  So I have to either return to Colorado each time or could I do an in and out same day in either Seattle or Anchorage?  Seattle might be better due to weather and I would have Tim or even Peter to stay with if I got weathered in.

9/25/20

I'm adjusting to the infusions.  They are still painful.  I don't like them but I am getting used to them.  Meanwhile, because I am becoming more and more mobile I'm beginning to feel some agency, like I still have some control over my life.  This also means I am entertaining ideas of living life, e.g., where to travel what could I do with myself that would be fun and satisfying.

It looks like now I will have four more infusions last on one October 22.  I could return to Juneau the next day.  I would then have a cystoscopy December 3 Seattle or Anchorage of even Juneau if Saltzman got a urologist to move to Juneau.

The best scenario would be December 3 no evidence of cancer and March 3 no evidence of cancer and feeling 100% recovered from hip replacement.

The worst scenario would be December 3 the polyp has returned and I need another TURBT.