Why I’m ( Now ) Scared of Balloons

Good news! 

Three months after my radical prostatectomy and my PSA test is holding steady at .01 ng/mL, which is essentially undetectable. Also, and I don’t want to brag, but I’ve stopped wearing protective pads. I still keep them around, like small absorbent security blankets, but I’ve stopped wearing them on a day-to-day basis. 

… well, mostly good.

With that, I’ll admit that I think my mind is trying to undermine my recovery; that it doesn’t want to accept that things are going, well, good.

I’ve started having some mild pain around my belly button where my surgeon made incisions. After a few ill-advised Google searches I initially thought the pain was the start of an incisional hernia, but in reality I think it’s more likely scar tissue. 

I’ve also been experiencing mild burning in my urinary tract where my prostate used to be as well as an increase in urinary frequency. Again, after a few more ill-advised Google searches I thought the pain was due to an increase in spicy and/or acidic foods, but the pain has persisted even after cutting such foods from my diet.

Both ailments are inconsistent and the more I think about them the worse the pain gets – which leads me to believe the issues are psychosomatic. The thing is? I’ve been down this road before when I was dealing with an unknown illness that, unfortunately, turned out to be cancer. Initially I was diagnosed with Non-Bacterial Prostatitis, or Chronic Pelvic Pain Syndrome ( CPPS ) and sent to a physical therapist. Once I was diagnosed with cancer the pain miraculously subsided, even before I started treatment. The takeaway for me was the realization that the mind can and does cause physical pain, particularly when stressed and anxious. Unfortunately with cancer, stress and anxiety are par de cor.

Part of the problem is likely physical, too. During my recovery from surgery I’ve been doing Kegel exercises to help regain and maintain my bladder control. I’ve been doing a lot, too, which is good, but whereas the exercises are designed to strengthen the muscles that make up the pelvic floor, I need to remember to practice relaxing them as well. Chronically tense muscles, as I’ve mentioned in a prior post, can get sore and cause pain. If you were to flex your arm and make a bicep for several hours it’s going to start hurting, right?

I’ve since stepped up my meditation and mindfulness and, when I am doing my Kegels, I remember to tense and relax. So far it’s seemed to help. 

No on Proton Therapy

I had a consultation with a California Protons last week. The facility was beautiful, if underutilized. The doctor was running late and as I paced the waiting room for thirty minutes I only saw a single patient, a young boy about ten years of age being rolled into treatment in a gurney. As a nurse rolled him through a couple of double doors it reminded me, sadly,  that cancer knows no bounds. 

Surprisingly, my consultation at the Proton Center had the opposite effect; it actually steered me away from it and back towards Photon therapy at UCSD. 

What convinced me?

First, I learned that neither treatment is more effective than the other; both Proton Therapy and Photon Therapy are just as effective in killing cancer. 

Second, I learned that the biggest difference between the two is toxicity, or collateral damage caused by radiation. The doctor I met with, who also works at UCSD, explained to me the different mechanisms used at both facilities. Photon, as I mentioned in my last post, is like a bullet with an entry and exit point. However, what I learned is that newer equipment, like that used at UCSD, greatly reduces toxicity by using a series of revolving, not fixed, beams. The beams converge on the tumor and, because they revolve around an axis, my body, the surrounding tissue, overall, gets significantly less radiation than it would with a fixed beam. Although Proton has no exit point, it still has an entry point, and because the beams don’t revolve, the entry point gets, arguably, more radiation than with Photon therapy.

Third, I realized that I’m terrified of balloons. 

“So, what’s that advertisement for?”, I asked the doctor. Behind him and to the right was a placard labeled “SpaceOAR HydroGel”. 

SpaceOAR Hydrogel

“Oh, you won’t need that. It’s a gel designed to minimize radiation damage. It’s inserted between the prostate and the rectum to protect the rectum from damage. You don’t have a prostate anymore so it’s unnecessary…”, he told me.

Phew. Dodged that bullet. A smile crept on my face.

“… but you will need this…”, he continued. He turned around, opened a drawer on his right, pulled out a small, deflated, plastic bag with a long hose attached to it, and held it up for me to see.

proton-prostate-balloon

“…uh, and what might that be for?”, I asked, the smile disappearing from my face.

“It’s an inflatable balloon that we insert into your rectum prior to treatment…”, he replied.

“…. every treatment?”, I interrupted.

“…. yes, every treatment as well as during your initial scans to align everything. The bag is inflated …. “, he continued.

“…. in my rectum?”, I interrupted again.

“… yes, in your rectum to keep everything stable so that the proton beam can be used more precisely.”, he finished.

At this point I just stared at the balloon dangling from the forefinger on his right hand, my jaw dropped open. 

“… for thirty treatments?”, I asked, terror creeping into my voice.

“Oh, about 37 including the scans.”, he replied.

“…each time?”

“Yes”, he said, and after catching the terrified look in my eyes, he continued, “It doesn’t hurt. There’s even an entire club dedicated to it called the ‘Brotherhood of the Balloon’”.

He chuckled.

I mocked a laugh.

Sorry, Pennywise, but there’s no way you’re going to convince me that shoving a balloon up my ass and inflating it isn’t going to hurt, red or otherwise.

Pennywise, from Stephen King's IT

“You’re, uh, not selling this very well you know.”, I joked, “Is the balloon used in Photon Therapy as well, or just Proton Therapy?”.

“No, UCSD doesn’t use it when administering Photon Therapy, However, they might if you’re interested though!”, he joked.

“You might even like it!”, Jodie chimed in. 

Shit. I forgot about Jodie. 

I had her conferenced in on my iPhone which was sitting on the seat next to me. Due to the Coronavirus restrictions she wasn’t allowed into the consultation.

Leaning over my iPhone I grumbled, “You first.”

Then I quickly turned back to the doctor.

“No, no, …. I’m good! Thank you.”, I smiled, realizing that my decision just got a little easier.

Lastly, there’s the cost. Insurance doesn’t cover the treatments, only the supplies and materials. The total bill would be between 10-15 thousand dollars which, although expensive, also includes an MRI, a CT Scan, and 30-40 balloons. To put it in perspective, UCSD billed my insurance company upwards of 10 thousand dollars just for an MRI so, relatively-speaking, it was a great deal.

But, no.

If I still had my prostate I’d seriously consider Proton Therapy for its precision and reduced toxicity, but my prostate was removed four months ago. Also, due to hormone therapy  and my low PSA score, my cancer isn’t likely to pop up on any pre-emptive scans like a big bulls eye, either.  Aside from my lymph nodes, which will be specifically targeted, my doctor will be essentially taking a shotgun approach and blanketing my nether regions with radiation. I don’t see how precision really matters and, seeing how the radiation is administered, at least at UCSD, the amount of collateral damage is evenly distributed.

My 3rd Lupron Shot

“Pull your pants down a little, please”, the nurse asked me.

I was at UCSD again. I had just met with my oncologist and it was time for another shot of Lupron, the hormone therapy drug that had been effectively starving my cancer for the last several months. I craned my head over my back to watch as my nurse put on a hazmat suit, gloves, and face shield.

“How come I don’t get a suit, too?”, I joked.

She laughed as she pulled a largish syringe from a hazmat baggie and started rolling it between her palms as if she were making a snake out of Play-Doh. 

“Why are you doing that?”, I asked.

“To warm up the medication and lower it’s viscosity”, she replied.

This was my third shot of Lupron. I still couldn’t get over the fact that I was being injected with something toxic enough to require protective clothing.  

“Let’s do the left cheek this time. Bend over and put your hands on the exam table.”, she said, still smiling. 

I winced as she pinched my ass, stuck in a needle, and slowly, oh so slowly injected the fluid.

“All ….”, she started.

Are we done yet ?!?

“…done!”, she finished.

“Do I get a lollipop?”, I exhaled, giving her my best attempt at a smile. 

I unclenched my hands from the exam table, leaving 10 deeply imprinted sausages in the vinyl padding as an ominous warning to future patients. 

“Nope, just a bandaid,”, she replied.

“Probably for the best.”, I agreed as she slapped a bandaid on my buttcheek. I had read a lot about how cancer feeds on sugar, so handing out lollipops probably wasn’t in the best interest of anyone.

“Please make an appointment for another shot in three months!”, she told me as I gathered up my stuff. 

I was tempted to ask if UCSD offered customer loyalty cards and if the fifth shot was free, but resisted. As I waddled out of the exam room I recalled one of my first meetings with my oncologist, when he told me that I would be on hormone therapy for two years. I managed a smile as I realized that, as of today, I was now one-third of the way through treatment. Next up? Radiation – using Photons, at UCSD.

Take care. Stay healthy. Live life.

-Scott

Previous : Radiation “Therapy”

My PSA Chart

#prostatecancer #cancer #prostatitis #psa #prostate #urology #oncology #radiationtherapy #radiation #ebrt #photon #proton #radicalprostatectomy #chemotherapy #hormonetherapy #surgery #lupron #leuprolide #firmagon #degarelix #docetaxel #drawnandcoded #iwillbeatthis

Radiation “Therapy”

Radiation "Therapy"

This is how I picture radiation therapy : a giant death ray pointed at my crotch. Fortunately, my mental image is far from the truth, or so my radiation oncologist tells me. Now if only I could convince my brain.

Take care. Stay healthy. Live life.

-Scott

Previous : Sometimes you just need to take more walks …

Next : Why I’m ( Now ) Scared of Balloons

My PSA Chart

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#radiation #radiationtherapy #cancer #prostatecancer #photontherapy #photon #oncology #oncologist #radiationoncologist #xray #hospital

Sometimes you just need to take more walks …

Sometimes you just need to take more walks

Part of my “team” when dealing with my cancer is my psychologist. We first met months before I had my official diagnosis, when I was dealing with the anxiety, stress, and subsequent pain by what was then thought to be prostatitis. After our first meeting I walked out of his office completely unconvinced by what he had to say. It took several months before my stubbornness subsided and I reconsidered. Since then he has helped me better understand, well, me.

I showed him some of my comics during our last meeting and he was genuinely impressed and suggested that I draw more. So I did. This one is for him. As you can probably guess, he loves dogs. This dog in particular has some very good advice, too, although he might be a tad biased.

Take care. Stay healthy. Live life.

-Scott

Previous : Thank You

Next : Radiation “Therapy”

My PSA Chart

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#mentalhealth #cancer #psychology #psychiatrist #pettherapy #dogtherapy #dogs # pets #exercise #walking

Thank You

meal-train-thank-you
A “Thank You” card I made for all of the people that helped my daughter and I recover from surgery. The card started off as a pencil sketch which I then imported and digitized using Inkscape, a free vector graphics program akin to Adobe Illustrator.

A lot of people came together to support my family and I during my daughter, Kaylee, and my respective recoveries from surgery. We were humbled by the number of people who brought us food, groceries, and offered their help. Thank you so much for your support, we are incredibly grateful and lucky to have such awesome friends, and family.

Take care. Stay healthy. Live life. And thank you for your support.

-Scott

Previous : Kegels, Pads, and … Radiation?!?

Next : Sometimes you just need to take more walks …

Scott's PSA Chart 05/01/2020

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#prostatecancer #cancer #radicalprostatectomy #surgery #drawnandcoded #iwillbeatthis #inkscape #illustrator #thankyou #card #recovery #mealtrain #drawnandcoded

Kegels, Pads, and … Radiation?!?

After six weeks of short term disability and two weeks of COVID-19 furlough for good measure, I returned to work from the comfort of my home office. My first task was a teleconference with my India and United States counterparts over Microsoft Teams.

“Welcome back! You look good!”, my boss remarked excitedly.

I had left my video feed enabled to alleviate any fears that I was still, in fact, me, and not the sullen grey bald husk of a cancer patient portrayed by the media and Hollywood. 

“I’m not dead yet!”, I replied cheerfully in my best British accent.

( Awkward Silence )

“Uh….Monty Python? John Cleese? Black Knight? Holy Grail?”, I asked, breaking  the silence.

( More awkward silence )

“Seriously, it’s okay to laugh guys. It’s a joke! I’m fine! Really, I’m okay!”, I pleaded.

( Caution laughter )

“…. so, let’s get started”, my boss interrupted awkwardly.

Well that went well. So much for laughter being the best medicine. Next time I’ll just do a “knock knock” joke. I kept silent for the remainder of the meeting. After it mercifully ended I quickly closed my laptop, pushed myself out of my chair, got to my feet, and hurried out of my office. I realized that I had forgotten to do something very important.

Kegels…

“Dad, why are you making weird faces?”, Kaylee asked me. 

“Exercising.”, I replied, trying not to break my concentration. I was sitting cross-legged on the carpeted floor of my bedroom. 

“But you’re not moving”, she replied with a confused look on her face.

“Oh, I am. They’re called Kegels. My doctor wants me to do these several times a day so that I won’t have to wear diapers”, I told her.

“So you won’t tinkle?”, she asked with a hint of amusement.

Sigh.

“Yes…”

“Oh, okay. Can I play Minecraft?”, she asked.

“Go for it!.”, I replied, more than a little relieved that the discussion wasn’t going to become a lesson in anatomy.

Prior to surgery I learned that a sphincter, or valve, on my bladder would be removed along with my prostate. This valve, made of smooth muscle tissue, is what men typically rely on to control their bladder. Fortunately, there is a secondary, underutilized sphincter made up of the muscles that support the bladder, prostate, and ( cough cough ) rectum. Collectively, these skeletal muscles are referred to as the pelvic floor. Before going into surgery I had started doing Kegel exercises at the recommendation of my doctor to strengthen these muscles. It had paid off. Although my pelvic floor was still relatively weak, I had an idea of where the muscles were located and how to relax and contract them. 

… and Pads.

As of two months post-surgery I am about 95% continent. I can lift weights, go for walks, lift things, and even sneeze without any mishaps. Mornings are better, but by the late afternoon I get, for a lack of a better term, sloppy, as my energy levels dwindle. Mentally, such “accidents” make me feel like a two year-old flooding my pants. In actuality, it’s never more than a drop or two. My surgeon expects me to make a full recovery, and I believe him, the last 5% is just going to take significantly more time. In the meantime I wear protection ….

“What are those?”, I asked Jodie while eyeing an Amazon box she had just carried in from the front door step.

“It’s a box of shields.”, she replied while opening the box to show me its contents.

I peered inside. 

“You mean Pads?”, I asked.

“…for men they’re called Shields. The thicker ones are called Guards.”, she corrected me.

“Aren’t they all just pads?”, I persisted.

“Pads are for women. Men wear Guards; they’re grey and ….”, Jodie started to correct me.

“Manly?”, I joked.

We both laughed.

“Clever piece of marketing there, if not a little sexist. You realize we could probably wear the same freakin’ thing, right”, I told her.

“Probably…”, she admitted.

“I’m just glad I’m out of diapers …. well, again”, I smiled.

One last thing before moving one – and this is big. Farting without peeing has proved to be especially challenging post surgery. Sadly, one of my favorite pastimes now requires way more precision than such a crude endeavor deserves. As a result “pull my finger” jokes are risky and no longer as funny as they used to be. Coincidentally, the endangered California Barking Spider, which prior to my surgery had invaded my household in multitudes, have become all but extinct

The Pathology Report

My prostate and twenty one lymph nodes were removed during my surgery. These were sent to a lab where they were biopsied for traces of cancer. A pathology report was created based upon the findings. I eagerly awaited the pathology report as it would better describe the extent of my cancer and set the stage for any future treatments.

Jodie and I went over the pathology report with my oncologist in the comfort of our own home. My oncologist deemed it safer than meeting in person and, since I wasn’t due for any injections or blood work, it just made sense. 

The results weren’t surprising, just disappointing. I guess I was hoping for miracles; that my oncologist would tell me, “You know, although your scans showed metastasis to your lymph nodes, we couldn’t find anything after biopsying them. You’re good to go! Here, have a lollipop on your way out!” Instead, the report described metastasis to three lymph nodes, each with slight amounts of cancer in them. They also found positive margins meaning that the surgeon was not able to remove all the cancer at the boundaries of my prostate. To confound matters even more I had just gotten my latest PSA test results and my cancer was “technically” undetectable at .01 ng/mL. The good news is that the hormone therapy that I had been on over the last six months was starving my cancer; the bad news is that in the process of doing so, it was obscuring it as well. 

“I think we should consider radiation therapy as a follow up to your surgery.”, my oncologist told me.

Shit

Radiation

Simpsons-Radioactive-Man
Sorry Bart, but radiation doesn’t give you superpowers – unless you consider diarrhea, frequent urination, and fatigue superpowers.

When radiation is performed immediately following surgery it is called “Adjuvant Radiation”. The alternative, “Salvage Radiation”, is performed later if and when a cancer reoccurs. Although I was a little apprehensive to undergo radiation so soon, the nomenclature alone had convinced me that sooner is better. Salvage is for recovering sunken treasures and derelict cars, not for me. I want to be proactive and nip my cancer in the butt before it becomes a salvage operation. Furthermore, every study that I have read suggests that Adjuvant Radiation has an edge over Salvage Therapy in keeping cancer in remission.

The type of radiation that I am to be treated with is called External Beam Radiation Therapy, or EBRT. EBRT works by damaging the DNA within whatever cells it is targeted at. Cells with damage to their DNA have trouble replicating. Faster replicating cells, such as those found in cancer, are more susceptible to the damage and less likely to recover than healthy cells.

So far so good, right? 

Well, the problem is that EBRT isn’t discriminating. It affects both cancer cells and healthy ones. Just as a bullet will damage tissue on the way in and on the way out, so will a beam of radiation. And, although I’ve lost all affection for my prostate, I’m still very protective of everything else that surrounded it – my bladder, colon, anus, spinal columns, sacrum, small intestines, and yes – even my skin. Fortunately, EBRT reduces collateral damage by using multiple, weaker beams that converge on the tumor rather than a single powerful one. The tumor is still subjected to the same radiation, but the surrounding tissue gets a much lesser dose.

So where do I sign up, right? Not so fast. It gets even more complicated. 

More than just a letter : Photons versus Protons

There are different types of EBRT, too. The most common is Photon Therapy, which is what UCSD and most hospitals use. Much less common is Proton Therapy which, although it’s been FDA approved since the late 1980’s, maintains a “boutique-like” status and is administered in stand-alone “Proton Centers”. The difference is that whereas Photon Therapy goes through the body and damages tissue along its entire trajectory, Proton Therapy, because it uses a different type of particle, stops at the tumor and causes a lot less collateral damage. This all comes at a cost; Proton Therapy is typically not covered by insurance. 

Next week I have a consultation at a Proton Center located in Miramar, about 15 miles from my house. It’s affiliated with UCSD and my oncologist was more than happy to refer me. Honestly, I wasn’t even going to consider it due to the additional cost, but the more I thought about it the more it made sense. First, Proton Therapy would reduce the amount of damage done to an area that is still recovering from surgery. The only thing worse than wearing diapers for number one is wearing them, albeit temporarily, for number two. Second, although Proton Therapy is expensive I would pay for it without hesitation for my family. Why should I feel any different for myself? Third, after talking to a friend who has had aggressive prostate cancer for over twenty years I realized radiation therapy might need to be performed again. He told me that when a cure isn’t possible you need to treat cancer like a chronic condition. Over the years he’s had multiple rounds of radiation performed to areas in close proximity to keep his cancer in check. Whereas the collateral damage caused by Photon Therapy might make repeated treatments impossible, Proton Therapy, with its more “delicate” beam might make additional treatments more possible. If my cancer is not curable and turns out to be a chronic condition I want to make damn sure that I never run out of “arrows” to shoot at it.

Take care. Live life. Stay healthy. And thank you for your support.

-Scott

Previous : Recovering from Surgery

Next: Thank You

My PSA Chart

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#prostatecancer #cancer #prostatitis #psa #prostate #urology #oncology #radiationtherapy #radiation #ebrt #photon #proton #radicalprostatectomy #chemotherapy #hormonetherapy #surgery #lupron #leuprolide #firmagon #degarelix #docetaxel #drawnandcoded #iwillbeatthis

The Uniball

The Uniball
I experienced a “little” swelling after my radical prostatectomy. Later, I was told it was due the 20 lymph nodes that were removed.

#prostatectomy #radicalprostatectomy #prostatecancer #lymphnodedissection #swelling #doctorhumor #surgeon #medicalhumor #massivecajones #drawnandcoded #sketchbook

The Meal Train

The Meal Train
Jayme organized a “meal train” to help Kaylee and I recover from our respective surgeries. A few time a week a different one of our friends delivered a meal to our house for dinner. I am incredibly grateful for their help.

#mealtrain #ilovefood #homecooking #friendsandneighbors #parentingfail #drawnandcoded #sketchbook

Recovering from Surgery

“Well, the surgery is done. The only thing to do now is recover.”, I thought to myself while staring at the ceiling in our bedroom. 

I had spent the better part of two days at UCSD having a radical prostatectomy to remove a cancerous prostate. Now I was laying in my bed at home, taking in the grandeur of our bedroom ceiling and contemplating life, or at least the next month or so of it.

“Well, I guess I better get up and get the day started.”

Getting out of bed required rolling back and forth until I could gain enough momentum to swing my legs out over the side of the bed while maneuvering around my catheter bag and hose.

“Are …. you okay?”, Jodie mumbled.

Whoops. Woke up the wife.

“Yeah, I just wanted to get up.”, I replied while looking at the catheter bag, “Although technically, with the catheter, I could lay here indefinitely…”

“… but then again, there is the eventual number two which the bag can’t …”, I continued.

“I’m up, too”, Jodie interrupted before I continued.

She rummaged around her nightstand a bit, got out of bed, and then walked around to present me with a small box.

“Ashley really wanted to give this to you yesterday, but with all the excitement she forgot.”, she said.

I opened the box, laughed, winced in pain, and pulled out a small, blue, smiling prostate.

“She thought you’d like it”, Jodie said, smiling.

“Oh, I do!”, I smiled back.

A replacement prostate
The clay prostate my daughter to replace the cancerous one removed during my radical prostatectomy. This one looks far happier than my own.

What follows is my account of what it is like to recover from having your manhood yanked out through your belly button, or as urologists like to call it, a radical prostatectomy. The recovery is humbling and far from easy. However, the humility and awkwardness of the recovery process resulted in some humorous moments which, fortunately, smoothed out the bumps.

Try not to laugh 

“One incision….two incisions… three incisions….four incisions…..and five. Five incisions!”, I said proudly to Kaylee who was hovering over me, her enormous pink cast dangling from her shoulder. It was now three days post-op and I was feeling brave enough to bare my belly now that the gas had subsided a little. 

My belly post prostatectomy.
Bloated, shaved, and bruised, this is what my belly looked like after my prostatectomy. For another twenty bucks I wonder if they would have shaved my chest, too.

“Hey! They missed a hair!”, I chuckled. 

In preparation for surgery my belly was shaved smooth –  except for a single solitary hair. Amusingly, the shearing stopped just below my chest leaving a thick mat of chest hair in stark contrast to the desolate plains below. Staring at it, I could only imagine how much it was all going to itch in a week or two.

“Look!”, I pulled up on it to show Jodie.

“Do you want me to shave it?”, she laughed.

“Ha ha ouch No! ouch Stop! OUCH!”, I laughed in pain.

Laughter might be the best medicine, but when you’re three days post-op the combination of bruising, incisions, and gas make it a painful endeavor. 

Ironically, Jodie and I had chosen Kaylee and my discharge to introduce our girls to The Simpsons, starting with Season One. The early episodes are absolutely hilarious – and excruciatingly painful. 

Eat your veggies

Almost a year ago I gave up meat, dairy, processed foods & refined sugars and switched over to a plant-based diet to help fight the symptoms of, what I would eventually find out, was prostate cancer. One of the less talked about benefits of being on a plant-based diet is that you’re seldom constipated.

Right. Where am I going with this? 

Well, my surgeon warned me that, after surgery, it could take upwards of a week to drop a deuce. While I was recovering at UCSD my nurse, Dan, even joked with me that bowel movements were cause for a celebration, or pizza party. When my kids were smaller I used to read them a child’s book titled, subtly, “Everyone Poops” that, through cute pictures, explained that bowel movements and their precursor, farting, were not-so-subtle signs that the digestive tract was working again. I wonder if my surgeon and nurse had read the same book?

I don’t want to brag but I cleared this particular hurdle in 4 days flat with flying colors. My advice to anyone preparing for surgery? Eat your veggies!

You’ll need to get crafty

A support patch was literally glued to my upper thigh during surgery to guide the hoses of my catheter bag. It didn’t take long for the adhesive to start failing to the point where the support was literally, and painfully, hanging by a few hairs. The support is not something that I wanted to fail, either; if it did I’d risk the full weight of the catheter bag pulling on my … well, yeah, you get it.

As such, five days after surgery was “Arts and Crafts Day”. Jodie helped me cobble together an assortment of medical tape, large band-aids, and alcohol pads. After multiple failed attempts I ended up MacGyver’ing the support back into place with moleskin and medical tape. Unfortunately, I had to reinforce my handiwork daily with more and more layers.

Later, when my catheter was being removed my nurse offered to remove the support, which was now buried under layer upon layer of tape. However, after eyeing the layers of adhesive, matted leg hair, and irritated skin I quickly stopped her.

“I’ll, uh. I’ll just take care of that home … I think…”, I told her.

The support, sans tubing, remained glued to my leg like a barnacle for more than a week after my catheter was removed before I gained the courage to rip it off. Yeah, it hurt. My daughters learned some new words that day, too.

Healing in Quarantine, with Kids

My discharge from the hospital coincided with the beginning of a state-wide Coronavirus quarantine, the closure of my daughters’ elementary school, and a powerful urge to re-admit myself to the sanctity of the hospital. Just a handful of days into recovery it was obvious that my daughter Kaylee, who had broken her elbow and also had surgery on the day of my surgery, was healing much faster than I was. 

“Kaylee, please be more careful so that we don’t have to go to the hospital again!”, Jodie said in a stern voice as Kaylee banged her cast against the wall.

“I’m a kid! Let me live my life!”, Kaylee yelled back with the hint of a smile.

Kaylee’s cast had become a battering ram. I could often hear her coming before I saw her as she dragged it along walls and bumped it into things. My sister-in-law, Jayme, sewed her a cool piggie sling, but she preferred to go without it. I felt sorry for her. There’s nothing worse than having a cast and none of your friends can get close enough to you to sign it. Kaylee, being Kaylee took it in stride. 

I’m No Superman

Originally I had planned to work during my recovery and not take any time off. It took me two weeks and the urging of my wife and friends before I realized how naive I was. Trying to work while recovering from surgery was ambitious; doing the same during a global pandemic while learning how to homeschool my kids was borderline insanity. It took a music video to finally convince me.  If you have cancer or a chronic disease and haven’t watched Jimmy Charles’ music video, Superman, you should. I applied for short term disability the next day.

Jimmy Charles, "Superman"
Jimmy Charles song, “Superman” made me realize that everyone needs help, even stubborn old me. Jimmy makes frequent appearances at Prostate Cancer events.

 

Recovering from surgery is hard, but good food and help makes it a lot easier. 

My wife is a genius in the kitchen, but even genius needs a break now and then. Fortunately, my sister-in-law, Jayme, set up a meal train to help my family and I with our recovery. To complicate the endeavor, Jodie and I eat only plant-based meals ( with the occasional sushi thrown in ). I was impressed by the number of families that took up the challenge and brought us home cooked meals.

When our friends weren’t bringing us meals, they were bringing us groceries. The Coronavirus had managed to turn the simple task of grocery shopping into an arduous and risky endeavor requiring masks, gloves, and space that neither Jodie nor I were willing to take on. Although we worked through the intricacies of Amazon Prime, it’s [lack of] Delivery Windows, and Food Shortages, it was our friends that kept our refrigerator full.

The Meal Train
Jayme organized a “meal train” to help Kaylee and I recover from our respective surgeries. A few time a week a different one of our friends delivered a meal to our house for dinner. I am incredibly grateful for their help.

The Uniball

My surgeon told me that to promote healing and reduce the risk of blood clots that I should get up and walk often, so I did. And, as standing proved to be more comfortable than sitting, I did a lot of that too. With my catheter bag in hand I would pace our backyard like a caged tiger, talk to my girls as they bounced ( Ashley ) or laid with her broken arm ( Kaylee ) on the trampoline, listen to Podcasts, and chat with friends and family on the phone. According to my iWatch I was walking over two miles a day and standing for eight after just three days of recovery. Good, right?

Probably not…

“So new development. Are swollen balls normal? I remember you said everything would be black and blue ….”, I texted to my friend, Pat, who had undergone the same surgery as me two years prior.

“TOTALLY swollen is normal”, Pat texted me back.

“This would be pretty hilarious if they weren’t, in fact, my balls.”, I replied.

“THAT is what I was talking about! I am 2 for 2 so far! The gas can’t even be explained and the swelling is grossly strange, but totally normal!” , Pat replied.

“Thank you for being there to share this awkwardly painful yet hilarious moment, Pat.”, I replied.

At this point my wife caught wind of our conversation and, wanting to help,  fired off a message of her own.

“Can he ice his balls?  Like after his vasectomy?  I keep offering him frozen peas but he doesn’t think it will help.”, Jodie asked.

“It’ll help a little – not a lot though. There is a lot of fluid that will dissipate over time.  It’ll probably take 1-3 days.”, Pat replied.

“In 1-3 days I’m pretty sure I’ll be able to sit on them like a pair of bean bags, Pat.”, I replied.

“Don’t sit on them.”, Pat replied.

“Lol. Alight, if you don’t hear from me tomorrow I rolled over in the night and they smothered me in my sleep. Thanks, Pat.”

Turns out having huge cajones isn’t manly at all – it’s just painful. Over the process of a week mine swelled into grapefruit-sized monstrosities and ultimately merged into one enormous uniball. It hung low, it swung to and fro, and it put me at the awkward crossroads of laughter, terror, and pain. Fortunately I found a jockstrap stuck to the back of my sock drawer. With a heave and a snap I managed to corral the beast. 

The Uniball
I experienced a “little” swelling after my radical prostatectomy.

I just need support

Around the same time that this was transpiring my sister-in-law, Jayme, sewed Kaylee a new sling to support her cast. The sling was made of fabric with tiny cute little pigs embroidered all over it. Kaylee, of course, loved it. Realizing that I also needed support, I fired off a quick text message to Jayme.

“Can you sew me a sling like the one you made Kaylee to support my ball?”, I asked Jayme.

“I could….”, she replied.

“He needs a soft cushion to elevate it.”, Jodie interrupted.

“Can you use this fabric so that it feels at home?”, I asked, sending her a picture of soft, luxurious, Chewbacca-like fur. 

Chewbacca Fur
My sister-in-law, Jayme, is a fantastic seamstress. However, although I pressed her to sew me a sling to support my swollen goods, she respectively declined.

“I can sew a soft pillow, yes. Just give me the required dimensions.”, Jayme replied

“My ball is approximately 13” in diameter.”, I responded while trying to maintain a straight face.

“Holy F**** Moly!”, Jayme replied.

Wardrobe Malfunction

I had just donned my bathrobe when Ashley sidled up next to me.

“Dad, why’s the floor wet?”. Ashley asked me.

“I dunno, maybe I spilled a little water?”, I replied, motioning to the half-full glass in my hand.

“It’s not your bag?”, she asked, eyeing the half-full catheter bag I had just hooked onto the pocket of my robe.

“Nope. I’m incredibly careful with it!”, I smiled, proudly.

She shrugged and headed downstairs for breakfast. I glanced at my catheter bag, reassured myself that everything was Kosher, and then for reasons unknown, decided to swing it around like a purse as I walked out of our carpeted bedroom.

Hmmmmmmm.

“The floor IS  wet”, I mumbled to myself.

It was then, after taking a closer look, that I realized that the little metal clip that secured the hose on the bag was unlatched.

Cursing, I grabbed some towels and carpet cleaner and started mopping up the sprinkles.

“Is everything okay up there?”, Jodie yelled from downstairs.

“YES! Great! Everything is great!”, I replied quickly.

After doing my best to clean up the evidence I made my way downstairs and into the kitchen for breakfast,

“Who wants waffles?!?”, I announced, attempting to put the mishap upstairs behind me.

“Yes!”, Ashley and Jodie replied enthusiastically from the adjoining family room.

“I don’t like waffles!”, Kaylee screamed..

“Waffles are just decorative pancakes, Kaylee. They’re made of exactly the same stuff!”, I replied as I started zipping around the kitchen, gathering ingredients.

“Yeeeeoow!”, I yelped in a shriek of terror.

“What! What?”, Jodie’s head whipped around from where she was sitting.

One of the hoses from my catheter bag had caught on a cabinet handle on the center island on which I was making waffles, causing a sharp and uncomfortable tug.

“Wardrobe malfunction!”, I winced, more in shock than in pain. After reassuring myself that everything was still attached I resumed making breakfast.

“Are you sure you don’t want me to make breakfast?”, Jodie, who was now standing next to me, asked.

“Yup, I just need to slow down. This thing is incredibly awkward and has hoses sticking out everywhere. I almost ripped off my …Uh”, I replied looking down at the girls who had joined us to see what the commotion was.

“What, dad? What happened …..”, they asked in unison.

Not ready for an impromptu “Sex Ed” I quickly extracted a waffle from the iron, cut in in half, and plopped the pieces down on a couple of plates. 

“Breakfast is ready!”, I interrupted, handing the plates to them.

Catheter Removal Fail

After almost two weeks my catheter was becoming increasingly uncomfortable. I was looking forward to getting it removed – and was profoundly disappointed when it wasn’t.

On the big day Jodie and I literally “plugged” the kids into their tablets and phones before racing to my appointment at UCSD. Our friend, Lora, volunteered to be our virtual babysitter; we set up a Zoom teleconference between her and the kids before leaving. 

As soon as I dropped my pants and my massive uniball erupted forth it was obvious this launch was going to be scrubbed.

“You have some pretty severe swelling”, the nurse said.

No shit.

The nurse was reluctant to remove my catheter. The swelling, he told me, could prevent me from being able to urinate and a new catheter would need to be inserted. I was under General Anesthesia when the first catheter was inserted and had no desire to experience the insertion of a second. 

“I thought the swelling might be a problem”, I admitted, discouraged.

“I considered photographing them for posterity, but decided against it. Weighing them was an option, too, but the only scale that would have been accurate enough would be our kitchen scale, and I’m not sure I’d ever be able to use it again for cooking if I did so.”, I attempted to joke.

Later, I would learn that my swelling was atypical due to the lymph node dissection performed by my surgeon. Because my scans had indicated that my cancer had spread outside my prostate into at least one lymph node, he had removed it along with about twenty others. The missing lymph nodes would normally drain the swelling. As the lymph nodes were now incognito, the nurse told me that it would take longer for the swelling to go down. He urged me to stay off my feet for the next few days and scheduled another appointment three days later to try again. 

I started pulling up my pants when the nurse stopped me.

“Uh … before you go, you’re scheduled for a Lupron shot, correct?”, he asked.

Rolling my eyes I sighed, “Yes”.

I dropped my pants again and waited for the inevitable shot to the butt.

The walk back to the car was brutal. Although the appointment left me disappointed and frustrated, I had developed severe chills and aches while waiting in the cold exam room. This was followed by chattering teeth, a headache, and by the time I was finally discharged, stiffness in my legs. Jodie lent me her jacket for warmth and her arm for support and we waddled, slowly, to the parking garage. 

“I was told to walk as much as I could!”, I told Jodie through chattering teeth as she turned on the heater and seat warmer, “I was told the missing lymph nodes wouldn’t be a problem.”

“Yeah, I know.”, she replied.

When we arrived back home we discovered that the girls hadn’t budged an inch. They were playing Minecraft on their tablets with their friends. 

“You’re back already?”, Kaylee shouted from her perch on the couch.

“We’ve been gone for three hours!”, Jodie and I said in unison.

“Have you guys even moved?”, I asked angrily while slowly making my way up the stairs. 

Man I felt like crap. The chills had now progressed into a pounding migraine. 

“I’m going to …. to take a nap, guys. I’ll be down in a little while.”, I said.

Shivering, I flopped into bed, pulled as many blankets on top of me as I could, turned the electric blanket up to 11, and quickly fell asleep. Over the next few hours my chills turned to fever, then back to chills, and finally, mercifully disappeared altogether.

There will be good days, and there will be bad days. 

“Yesterday”, I told myself, “was a bad day,”

I was sitting on a small metal bench situated in the corner of my backyard that faced my house. Inside I could see my daughters playing at the kitchen table.

The last couple of weeks had been rough, but at least I was recovering …

“Or at least I thought I was….”, I grumbled while staring at my catheter bag. 

At least the weird chills and fever had diminished. Initially, I was a little concerned that I might have contracted the Coronavirus, but the symptoms had disappeared as fast as they had come on. 

“And I haven’t been around anyone other than my family”, I reassured myself.

And then it dawned on me. It was probably the two tablets of Bactrim, an antibiotic, that were prescribed to me on the day that my catheter was to be removed. The timing was perfect. I’d have to take the same antibiotic again for the next catheter removal attempt. If I got the same symptoms again I’d know for sure.

“If the catheter comes out…”, I said to myself.

And then it was everything all at once. 

Prostatitis. 

Cancer. 

Hormone Therapy. 

Coronavirus. 

Surgery.

Pain. 

Swelling.

Catheter Fail.

“Are you okay?”, Jodie asked me.  

I looked up and turned to see that Jodie was sitting beside me. I wiped the tears from my eyes and took a deep breath before replying.

“Yeah. Yeah, I’ll be okay”, I said, “It’s just been too much. I think I’ve been trying to do too much. I’ve been trying to keep everything from falling apart when, in fact, the only thing falling apart was me.”

“I think it’s the … hormone therapy. It screws with my emotions”, I lied. 

Jodie smiled and nodded. She wasn’t buying it, but was pretending to nonetheless. The kids, at this point, had joined us on the small bench.

“Dad, are you crying? Are you okay?”, Ashley asked me.

“Is Daddy going to be okay?”, Kaylee asked Jodie.

I took a deep breath, wiped off the rest of my tears on the sleeve of my bathrobe, looked up at my kids, and did my best to smile.

“Yeah. Yeah, I’m going to be okay. Everything is going to be fine. It’s just been a rough few days. I think I’ve been trying to do too much.”, I confided.

They looked at me with concern. I grabbed each of their hands and gave them a tight squeeze.

“Everything is going to be okay, I promise!”, I emphasized.

And it would be, too. I’d make sure of it. Over the next few days leading up to my follow up appointment I was going to do the impossible – I was going to do as little as possible.

Pop the Cork

My chills returned shortly after downing one of two Bactrim tablets that were prescribed to me for my followup appointment. The chills, as expected, progressed throughout the day into the same symptoms I had at my last appointment. Next time I met with my oncologist I’d let him know, in the meantime it was time to get my catheter removed – for real this time.

Just like last time we set the kids up on the couch, surrounded them with electronic devices, and set them up on a Zoom Conference. The drive to UCSD was a quick endeavor as well; with everyone confined to their houses there was, just like on our last trip, absolutely no traffic.

For round two I had a different nurse, an older jovial lady that I couldn’t help but like.

“Okay, ready? I’ll need you to lie down and pull down your pants.”, the nurse told me.

“But, we just met!”, I joked.

She laughed and got down to business.

The process of removing a catheter was a bit of a surprise. They literally pump you full of 250mL of saline, pull the catheter, and have you pee it all out. 250ml is uncomfortable after having an empty bladder for almost two weeks. It was delivered through five syringes – I know because I counted each and every one. 

The catheter itself popped out with a flash of pain, followed by ( you guessed it ) 250mL of saline. It was a messy affair. I immediately tugged on a diaper, which caused me to dribble a little bit, followed by my shoes which caused me to  dribble a little more.

I looked up at the nurse with a slightly disgusted look.

She told me that having a catheter had weakened my pelvic muscles. The dribbling would subside over time as my pelvic muscles strengthened and that I would need to do exercises, called Kegels, to help strengthen them.

I managed a smile, and then slowly, the smile got bigger. A huge weight had been lifted off my shoulders. I had healed enough to begin the next steps in my recovery and, hopefully, dealt my cancer a blow from which it would never recover. 

Jodie and I left the exam room, found our car in the parking lot, merged onto the 56 East, and headed home to rejoin the girls at home. 

I didn’t dribble the entire way.

Take care. Stay healthy. Live life. And thank you for your support.

-Scott

Previous : Surgery(s)

Next : Kegels, Pads, and … Radiation?!?

My PSA Chart 04-10-2020

hiclipart.com-id_xvjlw

#prostatecancer #cancer #prostatitis #psa #prostate #urology #oncology #radicalprostatectomy #chemotherapy #hormonetherapy #surgery #lupron #leuprolide #firmagon #degarelix #docetaxel #drawnandcoded #iwillbeatthis

Minecraft Easter Egg Hunt

Logo

“Dad! Can we do an Easter Egg Hunt on Minecraft?”, my oldest daughter, Ashley, asked me.

In years past we would go to the Westwood Club, our community center, for an annual Easter Egg Hunt with our friends and neighbors. However this year, due to social distancing restrictions enacted to slow the Coronavirus, the community center would be closed and the Easter Egg Hunt, cancelled.

“That is a great – wait, no, fantastic idea!”, I told her excitedly, “Let’s do it!”

So, during the week leading up to Easter Sunday we created a Minecraft World, populated it with a bunch of colorful “eggs” ( we substituted in-game colored wool blocks ), and scheduled a Zoom teleconference so that the participants could talk.

We kept the rule simple. 

  • Each participant would be provided a “basket” ( an in-game chest ) that would reside in the starting area. 
  • Each basket would contain tools ( a pickaxe and shears ) which would allow the participant to “mine” the eggs.
  • A hunt would last 15 minutes. 
  • During the hunt each participant would have to find and mine as many eggs as they could and return them to their basket before time ran out. Only eggs inside the basket at the end of the hunt would be tallied. 
  • And most importantly, the participant with the most eggs wins.

For each hunt we also hid a special “golden egg” ( an in-game gold block ) which would be worth ten regular eggs.

To get by Minecraft’s 8-player limit we would hold two hunts. The first would be for the older kids who would re-hide the eggs for the second hunt, which would be for the younger kids.

The hunt had it’s hiccups, but everyone seemed to have a good time. Hopefully next year we’ll be able to once again meet up with our friends and neighbors at the community center for a real, in-person Easter Egg Hunt, but desperate times call for desperate measures and this measure, in my humble opinion, wasn’t so much desperate as it was fun.

Stay healthy and stay safe everyone.

Till next time.

-Scott

#Coronavirus #Minecraft #EasterEggHunt #SocialDistancing #MinecraftEasterEggHunt #SocialDistancingEasterEggHunt #Parenting #HowISurvivedCoronoavirusAndThrived #FamilyGames #KidGames #Quarantine #ShelterAtHome #StuckAtHome #Teleconferencing #Zoom