Inspiration from above

Scott Kelly - Endurance : My Year in Space, A Lifetime of Discovery

“Wow! Hey, did you know that Scott Kelly, the astronaut, had aggressive prostate cancer at 43?”, said my wife, Jodie, her head buried in a hard copy of Scott Kelly’s memoir, “Endurance: My Year in Space, A Lifetime of Discovery”.

“Uh, noooooo…”, I replied while pushing myself up from my pillow, interested.

“Yeah, he had surgery to get his prostate removed and was allowed to return to space.”, she said.

“Really?”, I asked excitedly.

“Yeah, I really think you should read this book, You’d enjoy it.”, she replied.

“I think I will…”.

Jodie was right, I enjoyed it a lot.

It’s hard not to like Scott Kelly, a rebellious, unmotivated kid who, after reading a book, “The Right Stuff”, by Tom Wolfe, hunkered down and fulfills his ultimate dream of becoming an astronaut. The lessons he learns along the way help him thrive later during his last mission, a year-long stay on the International Space Station (IIS) to measure the effects of long-term space travel.

As it turns out living in space is no pleasure cruise. Scott and his crew mates spend a lot of time fixing things which on earth, would be trivial, but in space are detrimental to survival. For example, my house has three toilets, and a plumber is at my beck and call; not so on the IIS where a malfunctioning toilet can be life threatening. Furthermore, everything needs to be flown in ( or out ), and the method of shipment, space flight, isn’t always reliable. Food, oxygen, – even garbage are at the mercy of successful launches.

Scott survives by what he calls “compartmentalization”, or the ability to focus on the most pertinent problem while ( temporarily ) putting aside the rest. Compartmentalization allowed him to focus during a strenuous spacewalk while numerous technical problems and the universe itself ( in the form of an enormous looming earth above him ) were both vying for his attention. It’s definitely a valuable life skill, and not just one for astronauts.

From his vantage point on the IIS, Scott concludes that the only thing protecting earth and its inhabitants from the harshness of space is a thin veneer of atmosphere. He makes it clear that life is both fragile and precious and that, aside from a handful of people of the IIS, we really only have one home. After reading about the diverse crews that Scott works with on the IIS, I get the impression that aside from language barriers and political posturing on earth, it’s important to respect everyone as you might not know when your life depends on them.

Lastly, on a personal level I am happy to see that there is life after cancer – even for an astronaut. As Jodie had told me, Scott Kelly was diagnosed with aggressive prostate cancer at age 43 and, after surgery to have it removed, was permitted to return to space – twice. This is incredibly reassuring to me given that I am scheduled to have the same surgery in a few short weeks. If Scott Kelly, the astronaut, can ride a rocket into space after having his prostate removed, I can surely return to my own ( much more modest ) life as well.

Take care.

Live life.

Till next time.

-Scott

Previous : How to swing from a thread

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How to swing from a thread

“You have cancer.”

Initially, I didn’t handle the news too well. I reached out and sobbed to my family and friends. I dismissed work and contemplated quitting. I checked and rechecked my life insurance policy and my will. 

So much for staying calm. 

After about two weeks of freaking out my friends, my family, and myself, I woke up one morning, looked at the sunrise from my bedroom window, and realized that I was still very much alive. Death, apparently, had better things to do. I realized that I did, too. 

I started by making my bed.

Later that day, while at work, I searched on YouTube for “Inspiring Cancer Stories”. I arbitrarily clicked on a link to a speech by Jen Sotham, a writer and musician who lived in New York with Stage 4 Melanoma. Her entire speech was fantastic, however at 12 minutes and 15 seconds she summed it up for me in one sentence.

She said, “This disease might kill me, but you will never ever catch me dying.”

That hit home. 

Yes, cancer is serious. Yes, if it’s not cured it’s terminal. But life is terminal. Rather than live each day hanging by a thread, I decided that I’d rather swing from it instead.

HangingFromAThread
Yes, cancer is serious. Yes, if it’s not cured it’s terminal. But life is terminal. Rather than live each day hanging by a thread, I decided that I’d rather swing from it instead.

As it turns out, psychological health has a dramatic effect on cancer. There are over 1,000 completed or in progress clinical studies that have investigated this relationship. Stress and anxiety can arguably increase your risk of cancer, or encourage it to metastasize. As cancer inevitably causes stress, and stress, cancer, I quickly realized that I needed to do something to stop the vicious circle.

Over the last year, with the help of my friends, family, doctors, therapists, and a whole bunch of books I have compiled a list of strategies, or coping mechanisms which have made living with cancer easier for me. Now, I would like to share these with you…

Know a few of your favorite things

We’ve been having family movie night at the Vandervort household lately. It typically starts with Jodie or I selecting a favorite from our youth, presenting it to the kids, getting shot down with scathing remarks, and then, finally,  forcing them to watch it anyway else they lose their electronic devices. So, over the holidays we watched “The Sound of Music”. During the first half of the movie, Julie Andrews sings a song to the Von Trapp children to help cheer them up during a thunderstorm.  The song is called “My Favorite Things”, and it lists several things that Julie’s character, Maria, thinks of when she is feeling scared or sad. Even if you haven’t seen the movie, you’ve probably heard the song. Our kids loved the scene and promptly fell asleep after it ended.

The following morning Jodie and I were awoken by Julie Andrews belting out “My Favorite Things” on our downstairs Google Home. Instead of making me angry, the song brought a smile to my face. 

What I’ve realized is that, when dealing with cancer, what makes me happy isn’t always obvious. I tend to lose sight of it amidst all of the chaos going on. Now, like Maria, I keep a list to remind me. When I’m feeling down, or scared, or depressed I look at my list, pick something off of it to do, and generally, it cheers me up.

sound-of-music
We may like different things, but Julie Andrews make a good point.

Be in the moment

This year for our New Year’s resolution Jodie and I both decided to reduce the amount of time we spend on our mobile phones, particularly at dinner time. We both realized that it was not only distracting, but a bad influence on the kids. Now we holster our phones at dinner and try to be in the moment.

When dealing with cancer my mind is anything but in the moment. I find myself constantly worrying about the future, scrutinizing the past for answers, or just letting my mind wander aimlessly. 

To help me stay in the moment I do four things :

  1. I remind myself that the future is unpredictable. I’ve realized that, given the chance, my mind will create the most outrageous scenarios, none of which will likely come true.
  2. I remind myself that the past can’t be changed. What’s done is done. Learn from it, don’t fret over it.
  3. When necessary I’ve learned to use a simple timer to limit the amount of time that I have to focus on a particularly stressful task. After, say, 45 minutes I’ll let my mind wander for a few minutes, or go for a short walk before resuming. 
  4. I’ve learned to keep my mind clear by keeping a TODO list. Rather than waste time worrying about, say,  renewing a prescription, I offload the task to the list. Later, when I have time, I sort the list by importance and start checking checking things off.

Don’t take statistics at face value

My wife, Jodie, and I talk about cancer a lot these days. One night, not so long ago, after tucking the kids in, I made the recurring mistake of looking at survival statistics on my mobile phone while getting ready for bed.

“Sigh….”

“What?”, Jodie asked me.

“Nothing….”, I replied.

“SIGH.”

“WHAT!?!”, Jodie asked me again, a little more annoyed.

“I made the mistake of looking up survival statistics for late stage prostate cancer on the web again. It’s not pretty.”, I admitted.

After glancing over my shoulder Jodie said, “We’ve talked about this before. Statistics are just an average based on a wide variety of people and ages.”

She took the phone from my hand and continued, “Not everyone has access to good health care, either. And, a lot of people don’t take care of themselves. You exercise, watch your diet, and you are doing great at keeping your stress under control. You are also much younger than the typical prostate cancer patient”

“Good point, honey. My doctors are top-notch, too. And, the statistics are probably based upon old data.”, I responded.

“Exactly! One of your doctors even said that by the time those statistics are published they are ten years out of date.”, she said.

“10 years is a long time considering the rapid pace of cancer research”, I agreed.

“Yes! So stop looking at the statistics!”, she demanded, with the hint of a smile.

Reassured, I was able to sleep well that night and learned three valuable things :

  1. An individual is not a statistic. 
  2. Statistics don’t lie, but they don’t always tell the whole truth, either. Never take them at face value. 
  3. Don’t research cancer stuff at bedtime.

Join the Club

Within a day after my diagnosis I received a phone call from Pat Sheffler, another dad in my neighborhood who had been diagnosed with prostate cancer a year-and-a-half earlier. Later that evening I got another call from David Ederer, a family friend who had been successfully battling prostate cancer for over 20 years. I spent over two hours on the phone that day talking to two complete strangers who only wanted to help me. I’ve been in contact with both men ever since.

I’ve heard prostate cancer referred to as “the club that no one wants to join”. It’s true, no one wants cancer, but the amount of unsolicited support that I’ve gotten has been nothing short of amazing. 

For me, joining the club meant embracing the disease, admitting that I need help, and talking openly to others. Membership has reassured me that I’m not alone, that I’m not trailblazing a new path, and that people just want to help. It’s also inspired me to help others with their fight as well. 

Take Control

Cancer is a loss of control. It’s my own cells recklessly growing and dividing. It’s side effects from treatments. It’s plans and vacations put on hold. It’s not knowing “why”. 

The loss of control is frustrating, but part of the healing process, at least for me, was to acknowledge it and move on. And, after accepting a loss of control, I was determined to take control of what I could. I didn’t want to be just a helpless passenger on my road of treatment, I wanted to be an active participant.

What I realized is that although a doctor can prescribe medication, surgery, and chemotherapy, they can only suggest lifestyle changes. Lifestyle changes such as diet and exercise were two things that were entirely up to me. They were two things that I could take control of in my cancer treatment.

As I’ve always been pretty good about exercising, I decided to focus on diet instead. Fortunately, my wife, Jodie, already had a head start after reading “How Not to Die” by Dr. Michael Greger. Since taking control, my wife and I have spent countless hours researching what I should and should not be eating. In a sense we decided that I would perform my own “chemotherapy”, but instead of injecting my body with harsh chemicals, I would nurture it instead with cancer-fighting food.

Does it make a difference? I think it does. The number of research studies on nutrition and cancer seem to indicate that it makes a difference, too. Regardless if it does or not, the act of taking control of one facet of my treatment has made me feel a whole lot better. 

Set Goals

“I’m not done yet.” 

These four words are incredibly important. 

If you have things to do, it gives you a reason to live. If you have a reason to live, you have one less reason to die. I have lots of things to do, and each day I have more. 

Long term goals help me visualize myself alive and healthy in the future. Cancer, I believe, hates this, so I try and set my long-term goals as far out in the future as possible just to rattle its chain. My daughters graduation? Yup, I’ll be there. Walk them down the aisle? Of course. That family vacation to Hawaii we’ve been trying to do? Of course I’ll be there; let’s go snorkeling, too.

Short term goals keep me focused or, more accurately, distracted from all of the cancer sh*t that is going on. Completing a short term goal yields a sense of accomplishment, or a burst of positivity, too. I feel that cancer abhors the positive so I try to set lots and lots of short-term goals. My first goal every morning, as it has been for a while now, is to make my bed. From there my goals obviously get more complicated, but every time I finish one I feel just a little better.

So, go away cancer, I have work to do. I’m not done yet. I have goals.

Listen to your inner voice

It’s the voice of reason and sympathy and it’s incredibly easy to ignore, especially when you are angry, in pain, or frustrated.

It’s the voice that keeps your middle finger from standing to attention when someone cuts you off in traffic. It’s the voice that rationalizes that lingering hip pain is more likely due to a bad night’s sleep than cancer. It’s the voice that urges you to get up and take a walk when you’ve been struggling with something at work for too long.

Since I started listening to my inner voice it had saved me from a whole lot of grief. I really wish I started listening to it sooner. 

Organize your thoughts

I get anxious when my mind is disorganized. When my mind is disorganized I find myself thinking about the same things over and over again to ad nauseum. Unfortunately, nothing has cluttered my mind more than cancer. The sheer amount of information that I have had to absorb from my doctors appointments alone has brought my mind to a screeching halt at times.

Fortunately, I’ve found that keeping a journal helps.

By keeping a journal I can write my thoughts down and spend time organizing them and validating their credibility. Later, when the same thought inevitably pops up again, I can consult my journal, and more easily dismiss things.

Meditation, Yoga, and Prayer

A calm mind is essential when dealing with diseases such as cancer. I realized this after being prescribed physical therapy to help with the pain caused by, what my doctors thought at the time, was Prostatitis. Every session my therapist would throw more “exercises” at me. By my sixth session I was stretching and breathing for up to 45 minutes a night. And you know what? It worked! My pain greatly diminished. Later I would realize that what I was essentially doing was yoga and meditation. 

anxiety-tension-pain
The Anxiety, Tension, Pain Cycle.

After reading “Explain Pain” by David Butler and “The Mindbody Prescription” by John E. Sarno I began to understand importance of maintaining a calm mind better. I learned that the opposite of a calm mind is an anxious mind. An anxious mind causes tension; think grinding teeth, clenching fists, and upset stomachs. This tension, over time, causes pain. And pain, in turn, causes even more anxiety. It’s a vicious cycle that builds and builds upon itself and, after understanding how it worked, I could finally work on breaking the cycle.

Yoga and Meditation were a good start, but pain isn’t always caused by anxiety. Pain can also be the result of disease or an injury. If you’re lucky a doctor can identify the causation, patch you up, and send you on your way. However, sometimes the path to health isn’t always a straight line. 

That’s where prayer helps.

Early on, when I was suffering through Prostatitis, I read “How to Stop Worrying and Start Living” by Dale Carnegie. In it he suggested prayer to help alleviate stress and anxiety. God, he suggested, can help shoulder burdens that can’t be shared with anyone else. I filed Mr. Carnegie’s advice in the back of my mind, but being agnostic, I didn’t take it to heart for several more months.  It was only later, after I started coming home from work in pain-induced panic attacks and relying on prescription drugs to help me sleep that, in desperation, I revisited his advice and started praying.

SaintPeregrine
Meet Saint Peregrine, the Patron Saint of Cancer Patients. He keeps me company at my desk every day. Laid out in front of him are a prayer token and a worry stone, these I carry with me all of the time. My mom gave them to me shortly after I was diagnosed.

Prayer has helped me tremendously, particularly after I was diagnosed with Prostate Cancer. Regardless of who or what you believe in – whether it be God, Allah, the Buddah, or the Great Spaghetti Monster in the Sky, it really helps to have someone to talk to about things that can’t be said, to ask questions of that can’t be answered, to ask favors of that can’t be granted, and most importantly, to have faith in, and trust that, in the end, everything is going to be okay.

Stay healthy. 

Live life.

Till next time.

– Scott

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Surgery is over a month away, today is now

UniversalStudios

“That was awesome!”, my oldest daughter, Ashley, screamed.

We had just gotten off “Harry Potter and the Hidden Journey” at Universal Studios, Hollywood. We, along with some of our friends, had taken advantage of a teacher “prep” day at Westwood Elementary and braved the 5N to Los Angeles.  Traffic was horrendous, there was a five car pileup just past Camp Pendleton that had snarled traffic for over an hour, but we made it. Now we were getting our first taste of what Universal had to offer.

I smiled at her, glanced at my phone, and noticed a message waiting. After listening to the message I squeezed Ashley’s shoulder and quickened my pace to catch up with Jodie.

“Are you okay?, she asked.

“Yup. I just got a call from Dr. Kane’s office. Surgery is set for March 16th at 7:20 AM.”, I told her.

“You sure you’re okay?”

“Yup!”

Then my phone started ringing again. This time it was from BriovaRx, the specialty pharmacy that supplies me with Zytiga, one of the two hormone therapy medications that I’ve been taking. Instead of picking up I let it go to voicemail and put the phone back into my pocket. By then Ashley and Kaylee had caught up with us.

“So, what’s next?”, I asked them. 

Their attention was elsewhere. I followed their eyes to a nearby cart with a big sign marked “Butterbeer” on it. Six dollars and ninety-nine cents later we were sharing a cup of the frozen concoction, remarking how it tasted a lot like cream soda. 

My phone rang a third time; it was BriovaRx again. I let it go to voicemail, put my phone back into my pocket, took a big chug of the Butterbeer, and smiled. 

It tasted better than cream soda.

Surgery is over a month away, today is now. Phone calls and diet be damned, I was going to have fun with my family.

“So, what’s next?”, I asked them again.

-Scott

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Cut out the “crap”

The upside of early morning appointments is that, if you’re lucky, your doctor is on schedule. The downside is that if you live in Southern California you hit traffic, lots of it. As Jodie and I crawled along the 56 West towards La Jolla, we sipped green tea from matching insulated bottles that we had bought from Costco earlier that week. Green tea has become our therapeutic drink of choice lately. I add ginger to mine as I’ve heard it has anticancer properties. Jodie prefers pomegranate. 

After parking I walked over to a kiosk, paid for a parking ticket, walked back to the car and slapped it on top of a large stack of prior tickets. 

“This is getting expensive”, I told her.

“Did the code work?”

“Nope.” 

The “code” in question is a department code that, if you’re lucky, is provided by your doctor for your appointment that grants you free parking. When given such codes I have milked them to expiration. Five dollars per appointment adds up over time.

After arriving at the urology suite in UCSD’s Koman Outpatient Pavilion we were quickly checked in and shown to my exam room. 

My eyes immediately focused on a tube of lube resting casually on the exam table.

F*uck.

As soon as the nurse left and closed the door I extricated the tube to the safety of the back of the room, hiding it as best as I could behind the sink faucet. Just in time, too.

Knock! Knock!

Dr. Kane’s resident entered, introduced himself, and quickly rattled off the entire history of my prostate in incredible detail. 

“So, we typically do rectal exams for our appointments…”, he said with a smile.

There it is.

Now, at this point in my treatment I’ve had six prior DRE’s, three CT Scans, three MRI’s, a bone scan, and a prostate biopsy. As much as I would enjoy having another finger stu….

“Is another DRE absolutely necessary? Will it help his treatment?”, Jodie asked, interrupting my thoughts.

My wife, through all of this, has been acutely aware of my ever-growing aversion to anything stuck up my ass and has been very vocal in its protection. God bless her.

“No, it’s unlikely. You can choose to defer if you’d like.”, he responded.

Tough choice, right?

After deferring, Dr. Kane’s intern quickly finished up with me and left the room with what I felt was just a  hint of dejection. 

Dr. Christopher Kane entered a few minutes later. I immediately liked him. He had a kind smile and even though he knew my history, he wanted to hear it from me. After introductions we got down to business.

Dr. Kane told me that, after reviewing my latest CT and MRI scans from last week, he was able to more accurately stage my cancer as T3N1.

Letters, numbers …. wha? 

“What does that mean? Is that better?”, I asked hopefully, “My prostate cancer was Stage 4 before.”

Dr. Kane gave me a brief overview of the TNM Staging System. TNM stands for (T)umor, (N)ode, (M)etastasis. The TNM System is used when staging metastasized cancer to describe where it has spread. He told me that my cancer is not clinically localized as it had escaped the prostate. He also reiterated that it is high risk because of the high Gleason grade and high PSA at diagnosis, making it T3. It had also spread to one nearby lymph node, making it N1. If two lymph nodes were involved it would be N2, and so on. Dr. Kane didn’t include an M because there is no evidence of metastasis to other organs or bones.

Next, Dr. Kane told me that the hormone therapy is working. It’s working so well in fact that my latest MRI, performed on January 24th, measured my prostate at 25 cc.

To put it in perspective a normal prostate for a man my age is 25 – 30 cc. The last time it was measured, prior to starting hormone therapy on November 6th, it was 46.6cc. That’s a 46% reduction in size in less than three months! Dr. Kane told me that the smaller size would make surgery easier. He also told me that I could stop taking Flowmax as well. 

I have been on Flowmax since April, 2019. It was initially prescribed to me for urinary pain and retention caused by, what my doctors at the time thought, was Prostatitis. Flowmax works by relaxing the muscles of the bladder neck, allowing things to ( for lack of a better term ) “flow” better. I never liked being on the stuff. It worked, but it was one more pill that I had to schedule around meals and came with its own side effects . Then, of course, there was the stigmatism of being on the same prostate medication as men twice my age. Needless to say, I was more than happy to be told I could stop taking it.

“So, now that my prostate is normal-sized and my PSA is in a normal range, what would happen if I stopped hormone therapy?”, I asked out of curiosity.

Dr. Kane told me that hormone therapy is only effective against roughly 90% of prostate cancer cells. If I stopped the hormone therapy, the resistant cancer would keep growing and I’d be right back where I started.

“Your cancer is no longer localized.”, Dr. Kane told me, “In the ‘Old Days’, which were 20 years ago ( chuckles ), once the cancer had left the prostate we’d just do hormone therapy. We didn’t treat it as a curable disease.”

“And now?”, I asked.

“Now we’ve found that when prostate cancer has spread to a nearby lymph node and we treat it with hormone therapy and either radiation or surgery, the cancer can potentially be cured.”, Dr. Kane said.  

Boom! So there’s a chance! Dr. Stewart hinted at the possibility. Hearing it from Dr. Kane was even more encouraging.

“We have lots of data on other men with disease similar to yours.”, Dr. Kane said, “The studies indicate that, even though the cancer has spread to a lymph node, it might be cureable. What we don’t have a lot of information on is which local treatment works better with hormone therapy – radiation or surgery.”

Dr. Kane, being a surgeon, proceeded to tell me the benefits of surgery. He started by telling me that his goal wasn’t to sway me either way, but it didn’t matter, I had made up my mind after talking to Dr. Stewart, my oncologist, a few weeks prior. 

“With surgery”, Dr. Kane told me, “we physically remove the tumor and hand it over to the pathologists for further analysis. This analysis will show them exactly where the cancer is and isn’t, how many nodes are involved, how the cancer has responded to hormone therapy and it may help with future treatments as well. Surgery also ‘de-bulks’ the tumor by removing the majority of it, and gives your immune system and other therapies a better chance at fighting off any residual cells.”

“And”, he said, “we can do radiation later if needed.”

Anticipating my next question Dr. Kane told me that he does 3-4 surgeries per week, totaling around 2,000. His first 500 or 600 were non-robotic, “open” surgeries. 

“And”, Jodie asked, “how many men have you operated on that were under 45?”

“I’ve operated on about 100 men under 45; the youngest being 29.”, he replied.

He continued to tell me that during the surgery he will do a lymph node dissection and remove the ones that are most high-risk, probably 45-60 total. The lymph nodes would then be biopsied by pathologists to check for metastasis. He told me that he typically did this for men whose PSA scores were ten or above. I’ve talked about lymph nodes in a prior post. To summarize, lymph nodes are part of our immune system. They help our bodies fight viruses, colds, and diseases – such as cancer.

“Will the removal of these lymph nodes cause any problems? Swelling? Infection?”, I asked.

“No.”, he said flatly, “the human body has hundreds of lymph nodes, many of which are located in the thighs and legs. The remaining lymph nodes will take up the slack. There is, however, an increased chance of blot clots, so we might put you on blood thinners in the hospital”. 

“How do you remove the prostate from the urethra? I mean, you can’t just slide it off like a bead on a piece of yarn”, I asked, “they’re kind of attached, right?”.

Dr. Kane then demonstrated with his hands how the urethra is cut and  ‘precisely’ sutured back onto the bladder after the prostate is removed. Then, he told me that everything is carefully pressure tested.

“Wait, pressure tested? Like, as in plumbing?”. I interrupted.

“Yes. To check for leaks.”

I hope Dr. Kane is better at plumbing than I am. I had a flashback of one of my first DIY projects, a bathroom renovation. I had just replaced a bunch of shutoff valves and copper pipe. After turning the water back on I casually walked back to the bathroom to find water spraying everywhere and a small lake on the floor. 

“Now, let’s talk about side effects”, Dr. Kane said.

First, he told me that surgery causes temporary urinary incontinence, but the risk for permanent incontinence is very low for a young, healthy patient and an experienced surgeon. Although the incontinence usually resolves itself within 6 weeks, prior to that I’ll probably need to wear a pad, or ( shudder ) diapers. The prostate acts as a very efficient “valve” to the bladder. It’s why men can go longer than women without peeing. Without a prostate, men, like women, need to rely solely upon their pelvic muscles to maintain continence. However, whereas men tend to be more muscular than women, this advantage ends with their underutilized pelvic muscles. Kegel exercises, exercises designed to strengthen the pelvic muscles, help with the incontinence. I have been doing them for the last couple of weeks after my last appointment with Dr. Stewart. 

“And then there are the sexual side effects.”, Dr. Kane began.

Here we go…

Dr. Kane told me that the nerve bundle that controls erections is, unfortunately, attached to the prostate. Removing the prostate and sparing the nerve bundle is tricky and not always possible.

“After your surgery, when you take a break from hormone therapy, we can talk about injections and medications to help with erections,” he told me.

My brain quickly visualized where said injections might be administered and urgently wanted to switch to a different topic.

“Look, I just want to live. Right now erections are the furthest from my mind. I’m more concerned with wearing diapers for the rest of my life. Does the nerve bundle also control incontinence?”, I interrupted.

“No, the nerves that control your bladder will remain intact. You might change your mind about sex once this cancer is behind you…”

Behind me. Strong, reassuring words – I was really beginning to like this guy! However, for this “Casanova”, the thought of popping libido pills and whipping out a syringe during sex were concerns for another day. If I can’t control my own bladder I sure as hell wasn’t going to be interested in sex. 

So, what is the recovery like after surgery?”, I asked in an attempt to change topics.

The recovery wasn’t as bad as I imagined. As usual I “primed” my expectations by scouring the internet for articles and forum posts. Dr. Kane burst these expectations one by one like the overinflated balloons that they were. He told me that I would need to stay overnight in the hospital. A catheter would be inserted and would have to stay there for one, maybe two weeks. He said that it could come out as early as three days, but swelling would make it difficult to pee. He told me that I’d be up and walking after surgery. After two weeks I could resume yoga and using elliptical exercise machines. Weight lifting, however, would have to wait at least six weeks. Bad, but not nearly as bad as I had read.

The restrictions on weight lifting was my biggest concern. One of the side effects of hormone therapy is a reduction in muscle and bone mass. I’ve been told by multiple doctors and nurses how important weight lifting is in order to counteract its effects. A six weeks hiatus is long, but still shorter than the two to four months than I read about on the Internet.

“Do you have any experience with your patients using Pulsed Electromagnetic Field Therapy before or after surgery to help with healing?”, Jodie asked.The therapy, also known as PEMF, has helped our friend, Lora, with her back pain tremendously. I was curious, too. When I was suffering from Prostatitis I had read several articles on how PEMF reduces inflammation.

“I have patients that have tried it and I don’t know how much it helped but if you want to try it go ahead.”, he said.

Finishing up he said, “The goal is to remove all of the cancer or at least 99% of it, which would give the immune system a fighting chance.”

And that’s really it, right? Our immune systems are responsible for keeping cancer in check. Everyone has cancer cells at some point, it’s up to the immune system to step up and kill off the cancer cells before they become a tumor. My immune system was apparently not up to the task. This failure is one of the reasons why I advocate a plant-based, low-sugar diet.  In addition to the health benefits, I wanted to give my immune system the best “tools” for the job. It’s also one of the reasons why I’ve worked on reducing the amount of stress and anxiety in my life through exercise and meditation. The fact of the matter is, if hormone therapy and surgery leave even a speck of cancer alive in my system, I want my immune system to be in the best shape possible to stop it.

Dr. Kane struck me as experienced and confident, two qualities that you want in a person who will be responsible for tearing out your manhood. While he was getting up to leave to see his next patient I asked him one more thing.

“Dr. Kane. Before you go, can you hold your right hand out in front of you, palm down”

He looked at me with a puzzled look, but complied.

I waited ten seconds before responding.

“Good. Nice and steady. You’ll do fine!”, I said chuckling, “Thank you for meeting with my wife and I today”.

He smiled, gave a slight laugh, and told me to expect a call from his scheduler.

I guess the only thing left to do now, is wait and, well … kegels. Sh*t, I can’t believe I just wrote that.

Live life and stay healthy everyone, and thank you for your love and support. 

– Scott

Previous : I have a dream …

Next : Surgery is over a month away, today is now

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I have a dream …

This morning my youngest daughter, Kaylee (8) managed to push her older sister, Ashley (10) down while attempting to knock a hat off of her head. Chaos ensued. As Jodie escorted them out the front door to school I heaved a big breath and thought to myself, “It’s going to be one of those days…”.

Later, after I settled in at work, Jodie surprised me by emailing a picture of an assignment that Kaylee had done in her class for Martin Luther King’s birthday…

IMG_3873
An assignment for Martin Luther King’s birthday given to my youngest daughter, Kaylee (8) in her classroom.

… I immediately got teary eyed ( I blame the hormone therapy ).

Words are powerful, especially those from your 8-year old daughter.

– Scott

Previous : I get to keep my hair, for now…

Next : Cut out the “crap”

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I get to keep my hair, for now…

I really like the UCSD Medical Campus on Campus Point Drive in La Jolla, California. It makes seeing my oncologist just a little more palatable. It’s open, airy, and refreshing compared to some other campuses that I’ve set foot on. Today was my fifth appointment with Doctor Stewart. The last time he laid out some potential therapies to treat my prostate cancer. This time I expected some more concrete plans. My wife, Jodie, waited with me in a small familiar exam room. Doctor Stewart was running behind schedule. Living with cancer has made me realize that “late” is subjective. He very well could be comforting another cancer patient in an exam room next door. Thirty minutes later he walked in, right on time.

One thing I like about my oncologist, and UCSD in general, is that a team of doctors work on your case. I’ve mentioned it in prior posts, but UCSD has a standing “Tumor Board” where all of the oncologists meet to discuss the cases for the week. It’s incredibly reassuring. Last week, the Tumor Board discussed my case and refined my treatment plan.

Continue Hormone Therapy

The first decision was to continue with the 2 years of hormone therapy. I wasn’t too surprised as after two months my PSA, or Prostate Specific Antigen level was now within the normal range. I can almost picture hundreds of thousands of emaciated prostate cancer cells, cinching their belts, sitting on their haunches, starving in a dry, barren wasteland. Testosterone? Fresh out, sorry.

I created a chart for my PSA level and will start including it at the bottom of future posts. Keep in mind that PSA measures inflammation, and by extension, indicates cancer. However, after talking to Dr. Stewart, I realized that it doesn’t always measure how much cancer. Dr. Stewart told me that once prostate cancer metastasizes the scale diverges. As an example, he described one patient of his with bad metastasis to the bones who only had a PSA of 7.0. As far as my prior scans indicate, my cancer hasn’t metastasized in such a way, but my PSA was much higher at 103.

Side Effects

To menopausal women everywhere : I feel for you. I haven’t caved in and started fanning myself in public out of pride, but I have been tempted. The hot flashes, particularly at night, are bad. However, in a weird twist, I haven’t slept so soundly or have had such vivid dreams in years. Typically I wake up about four times a night in a sweat, stumble to the bathroom to drain my angry prostate, collapse into bed, and immediately fall back into a deep slumber to catch the latest of what’s playing on “Scott’s Twilight Cinema”. It’s bizarre and Dr. Stewart was more than a little concerned that I wasn’t getting enough sleep. When he asked if I wanted him to prescribe anything I just smiled back and shook my head “no”. I can only assume that my convenient narcolepsy is a result of sheer exhaustion from the hormone therapy as well as a result of my bedtime ritual of yoga, meditation, and prayer. 

It’s not all “good” though, hormone therapy will totally mess with your emotions.

Now, I find myself crying for no reason, anywhere, anytime. I’ve never been the stoic emotionless type, but it’s a little ridiculous. To my friends and family, if you ever catch me with tears in my eyes, rest assured I’m likely having a medically induced man-o-pausal melodramatic moment. 

And your libido …

Hormone therapy will destroy anything resembling libido. And, ( cough, cough ) it might even cause shrinkage. Now, I don’t make a habit of cupping my balls, but I’m pretty sure that they don’t hang so low or swing to and fro like they used to. Fortunately, I have read that this “condition” is temporary and is a direct result of the hormone therapy. In the meantime, I’ll just have a little extra real estate in my underwear.

And your liver …

Hormone therapy, particularly Zytiga, also messes up your liver function. During the first few weeks of being on the hormone therapy I saw my Bilirubin, ALT (SGPT) and Bi-Carbonate levels rise above normal. Bilirubin and ALT (SGPT ) are used to measure liver function. Bi-carbonate measures carbon dioxide in your blood. Jodie reminded me that when our oldest daughter Ashley was born, the doctor placed her under an artificial lamp to bring down her Bilirubin levels. She suggested that I try to get more sun and start taking walks throughout the day to bring mine down. Her advice seems to have worked because as of my last blood test my liver function has returned to normal.

And, it’s expensive …

Hormone therapy is outrageously expensive. Dr. Stewart initially started me on Firmagon, a monthly shot, to the tune of $3,837.23. The insurance company only covered $3,380.40 of this. I ended up paying $456.83 out-of-pocket. Since switching to Lupron, a shot that lasts three months, the cost has been reduced to $2,978.26. The insurance company covered $2,623.19, leaving me to pay $355.07 out-of-pocket. What a deal, right? Zytiga? Zytiga costs roughly $10,000 per month. I end up paying $10 per month after insurance, discounts, and financial aid. 

Chemotherapy is off the table for now

The second decision made by the “Tumor Board” was to not do chemotherapy.

“For you, there is insufficient evidence that the benefits of chemotherapy would outweigh the risks.”, Dr. Stewart told me.

“My youngest daughter is going to be pissed”, I replied.

“How so?”

“She hates my beard. She was hoping chemotherapy would make it fall out.”, I replied.

Honestly, I was more than a little relieved. Chemotherapy works by poisoning the entire body with chemicals. The weaker cancer cells die. The stronger, non-cancer cells eventually recover. Chemotherapy affects all cells – including those belonging to the immune system. The immune system is responsible for fighting off colds, viruses, and most importantly, cancer. As I have spent the last few months attempting to cleanse and strengthen my body to fight my cancer,  poisoning it just didn’t seem right. At least not at this point in my treatment. For now that particular arrow will remain in the quiver.

Surgery has been fast tracked

At the end of the month I have a consultation with Dr. Christopher Kane to discuss a radical prostatectomy, or the removal of my prostate. 

I’m ready.

Three months ago when Scripps suggested it to me I wasn’t. Now I am. In fact, during my appointment, when Dr.Stewart  told me that he wanted to discuss options for the next steps in my treatment, I interrupted him.

“Surgery”, I blurted out. “Even if we don’t get all of the cancer out, it will make me feel better knowing that the biggest source of it is no longer in me.”

“Is that what you would have chosen?”, I asked.

“Yes, if it were me I would choose surgery, too”, he replied.

Re-staging the Cancer

Before surgery Dr. Stewart wants to re-stage my cancer. When I asked why, he told me that cancer is re-staged to determine how it has responded to treatment or, to determine how much it has metastasized. Within the next few weeks I’m to undergo yet another CT Scan of my abdomen, chest, and pelvic region as well as another MRI of my prostate. The scans will act as a “map” for the surgeon during surgery. They might also show “scarring”, or places on my bones and tissue where the cancer has receded from as a result of the hormone therapy. 

This will be my 3rd MRI and 3rd CT Scan in less than six months. I really need to ask if they have a rewards program.

Coffee enemas and other alternatives

Abruptly, Dr. Stewart turned to Jodie and asked, “So, what are you not letting him eat now?”

Ouch. I must have told him about the Thanksgiving Tofurkey.

I quickly butted in.

“The thing is, doctor, we’ve read a lot of articles on how a plant-based diet can be a good complementary treatment for cancer.”, I replied.

“Look, I just want to make sure that you’re not making yourself miserable. You should eat whatever makes you happy. There’s not a lot of evidence that a plant-based diet helps…”, he said.

I quickly glanced at Jodie, knowing that she was thinking exactly what I was thinking.

“We’ve both read a lot of books and studies that say that it does help. I’ve even read that cancer hates ginger and have started adding it to my tea.”, I said.

Doctor Stewart smiled.

“I add ginger to my tea, too…”. He started.

“…and you don’t have cancer!”, I joked.

“…the thing is, if you conduct a study enough times, chances are you’ll eventually get the results that you are looking for.”, he said, adding, “We’ve had at least a couple of patients that have refused treatments. One of them ended up at a clinic in Mexico getting coffee enemas.”

“Doctor Stewart”, I replied, “I told you from day one that I would do whatever you recommend. I realize that it is my best chance at being cured. However, Jodie and I are having a lot of fun with our plant-based diet. It’s delicious and I’m fortunate to have a wife that is a really good cook.”

“Okay, sounds good Just tell me if you start taking Saint John’s Wort or something crazy…”, he said.

Another DNA Test

Before we parted ways, Dr. Stewart brought up the results from my DNA testing.

“I don’t trust the results and want to send in another sample of your blood.”, he said.

Looking down at the bandage wrapped around my right arm I replied, “I had a blood draw this morning but I still have my left arm. Why don’t you trust the results? What are you looking for?”, I asked.

“Your last blood draw didn’t show any mutations and, given your family history and that the lab that we used took way too long with the results, I want to make sure that they are accurate.”, he said, “It will probably cost another $100.”

Sigh. What’s another hundred bucks.

To put it in perspective the grand total billed to our insurance company for my cancer treatment for 2019 was $75,857.70, and that does not even include the cost of medications. Shocking, right?

 

After shaking hands and parting ways I walked over to Moore’s Cancer Society to have a small vial filled with my blood. As I sat in the waiting room I couldn’t help but notice another lady my age, bald, wrapped in warm towels, slumped in a chair. I wanted to go over and talk to her, to compare war stories, to comfort her, but before I could muster the courage I was called in to have my blood drawn. When I was done, she was gone.

Having a Personal Chef Helps

I think what Doctor Stewart didn’t realize is that I have an excellent personal chef. There was definitely a learning curve. For the first few weeks of my transition to a plant-based diet I thought I’d be doomed to salads for the rest of my life. Fortunately, Jodie stepped up to the plate and I greatly appreciate it. It takes a lot of effort, too. She needs to shop for fresh produce at least twice a week. Now our freezer is mostly empty and our vegetable drawer is spilling out into the rest of the fridge.

Doctor Stewart is right. I shouldn’t put too much faith in my new diet, but it makes me feel better knowing that I am doing everything I can to beat my cancer.

Stay healthy.  Live life.

Till next time.

– Scott 

Previous : The plan, for now …

Next : I have a dream …

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The plan, for now …

Jodie was enthusiastic when I exited the bathroom a couple of weeks ago.

“Hey, that was a good pee! It sounded like it was coming out fast!”, she said.

“Uh, thanks. I’ve been feeling a lot better…”, I replied.

I was inclined to give her a fist bump, but quickly withdrew when I realized I hadn’t yet washed my hands. Honestly, I don’t know if this is a new high in our relationship, or a new low.

The day after our rendezvous I received the first of my bi-weekly PSA tests since starting hormone therapy. It was 10.70. To put in perspective, the last time I had my PSA measured was on Halloween, and it came back at 103. As of my appointment with my oncologist earlier this week, my score was 3.85. PSA scores under 4 are typically considered “normal”. The hormone therapy is working, at least for now ( more on that in a bit ).

This week I had my third appointment with my oncologist, Dr. Stewart.

Since my last appointment I had a full-body MRI as part of a research study. I was eagerly awaiting the results of this as well as the results of the genetic testing performed on my biopsy. As with my last two appointments, Jodie and my mom joined me in a small exam room.

The MRI results showed no more metastasis other than the sole lymph node that “lit up” in my prior scans. The good news is that the lymph node had actually shrunk from 18mm to 11mm. Normal is less than 10mm. Awesome! More evidence that the hormone therapy is working.

So what is a lymph node? Lymph nodes collect fluid, waste material, and other things (like viruses and bacteria) that are in the body tissues, outside the bloodstream. There are about 600 lymph nodes in the human body. They are spread throughout our body and interconnected by a series of lymphatic vessels. If cancer metastasizes to a nearby lymph node, it can traverse the lymphatic vessels like a highway and spread elsewhere.

My genetic screening results are still not in. There is only one prostate biopsy, and three different labs have been vying for it. Everyone wants a piece of me. The genetic screening lab, being last in queue, is still waiting. Dr. Stewart did however, tell me that there were no tumors detected in the blood of my biopsy.

Then we started discussing my future treatment.

My prostate cancer, due to it having spread to a lymph node, is an early Stage 4. This usually means treatable, but not curable. Dr. Stewart told me that he believes that there is a tiny chance that he might be able to cure me. In my prior appointments he told me that due to my age and general good health that he wants to be very aggressive in treating my cancer. At this appointment he was more specific as to what those treatments might be.

The thing about cancer treatments is that they have to be carefully orchestrated. Some treatments can only be performed once. Others can adversely affect future treatments. A friend of mine who is also fighting prostate cancer referred to treatments as arrows in a quiver. You only have so many arrows to shoot, so make each one count.

My treatment is to span roughly 2 years. During that time I will continue hormone therapy.

Hormone therapy, as I have mentioned in prior posts, starves the prostate cancer of testosterone which prevents it from metastasizing. Hormone therapy is also referred to as “chemical castration” as it blocks the production of testosterone in the ( cough cough ) testicles. Hormone therapy works well, but after a couple years the prostate cancer can start to adapt and either becomes more adept at slurping minute amounts of testosterone or, starts producing it on its own. At this point the cancer is referred to as Castration Resistant Prostate Cancer (CRPC). Hormone therapy is not entirely a single-shot “arrow”, but it’s close. It’s performed through a variety of medications and when one medication fails, another might still work.

Three months in I will start Chemotherapy.

The chemotherapy will be performed in 6 cycles over 18 weeks using a medication called Docetaxel which, from what I have been told, is generally well tolerated. While undergoing chemotherapy my hormone therapy might be reduced by eliminating Zytiga, which is rough on the liver. Chemotherapy is a systemic treatment in that it affects the entire body. It is administered through the bloodstream and kills cells that are undergoing mitosis, or cell division. Cancer cells tend to divide much faster than normal cells, so they are the most susceptible to the treatment. That’s not to say that healthy cells aren’t affected as well. Hair cells, among others, divide quickly as well.

“So am I going to lose my hair?”, I asked.

“You will only lose the hair you want to keep.”, Dr. Stewart replied with just the hint of a smile.

“Seriously?”. I replied, chuckling.

Humor, I imagine, is a fine line for medical professionals when dealing with cancer patients. I am fortunate that Dr. Stewart knows how to walk that line with skill. The truth be told, most men can pull off bald heads; no one can pull off the lack of eyebrows or eyelashes. That’s not to say my daughter Kaylee, isn’t looking forward to it. Nightly, I get asked the same question from her …

“Dad?”

“Yes?”, I replied.

“Are you going to have chemotherapy?”

“More than likely.”, I replied.

“Yay!”

“Why are you so excited?”, I asked.

“Because I don’t like your scratchy beard!”

Chemotherapy typically becomes less effective the more it is used. Similar to hormone therapy, the cancer cells adapt to it. However, like hormone therapy, chemotherapy is not necessarily a single-shot “arrow” either, as there are a variety of different medications that can be used.

After chemotherapy Dr. Stewart plans to run additional CT Scans on me to see how my prostate cancer has responded to the treatments. The CT scans will also prepare the surgeon for yup, you guessed it …

Six months into my treatment I will have my prostate removed through a radical prostatectomy.

Originally, Dr. Stewart was torn between surgery or radiation therapy. I asked him why and he told me that the “standard of care” dictates that surgery is typically not recommended for prostate cancer that has metastasized to a lymph node if the lymph node has exceeded 20mm. If you remember from earlier, my lymph node at its worst was on the cusp at 18mm.

For now Dr. Stewart has chosen to leave the radiation therapy “arrow” in the quiver and I agree, wholeheartedly. If radiation therapy is performed prior to surgery it can make surgery more complicated or not possible because of scar tissue/tissue damage. Radiation therapy is also typically a single-shot “arrow”; it can also be performed only once on a particular area. Leaving it in the quiver preserves a very effective treatment if the other treatments fail.

I have an appointment scheduled with a urological surgeon early next year to discuss what, exactly, surgery entails. Until then I’ll leave you with two words : incontinence and impotence. In a weird twist of irony, my kids will be carrying a diaper bag for me for once. Fortunately, from what I have read, both are usually temporary conditions.

If I seem a little cavalier about having my prostate removed, I have my reasons. From a purely psychological perspective it’d be reassuring to have the “bag of disease” removed from my body even though I am well aware that the cancer has metastasized outside of it. There are also physical issues as well. As I have mentioned in prior posts, my prostate has also caused numerous urination problems ranging from pain, to urgency, to a weak stream.

And that, in a nutshell, is my treatment plan. Piece of cake, right?

But that’s not all…

Next, Dr. Stewart had me sit on the exam table and breathe while he probed me with his stethoscope. He then he had me pull up my shirt and lay down while he palpated my abdomen.

“Your hands are freeeeezing”, I yelped.

“It’s the alcohol .”, he replied.

“Uh, you drink at work?”, I asked.

He just laughed at me. I laughed back, confused.

“Hand sanitizer!”, Jodie added.

“Oh…”, I said, sheepishly. Okay, so maybe the hormone therapy is dulling my mind a little.

“Originally, I started you on Degarelix, or Firmagon, because I was concerned about a testosterone spike making your symptoms worse. Now, I want to start you on Leuprolide, or Lupron. It’s administered as a single shot every three months instead of monthly.”, Dr. Stewart told me.

“And where is this shot administered?”, I asked.

Before Dr. Stewart could answer, his nurse materialized in the doorway, blocking my escape route.

“Drop your pants a little and put your hands on the exam table.”, the nurse told me.

“Ohhhhhhh….”, I replied.

“Uh, I’ll talk to you guys later…”, my mom said as she squeezed past the nurse and made a hasty escape out the door.

“And, you’re staying for this?”, I asked Jodie.

“Sure!”, Jodie replied, a little too enthusiastically.

I shot a glance over my shoulder at the nurse, who was now wearing what looked like a hazmat suit and gloves. She held a transparent bag marked with a biohazard symbol that contained a syringe full of what I imagined, was Lupron.

“Wow! I honestly didn’t think it was possible to make syringes where the needle is bigger than the barrel.”, I told the nurse, “Be gentle, or I’ll kick like a mule.”

The nurse was fantastic. I barely felt a thing, well, not until later on that day anyway.

“Have you ever been tempted to slap on a cute pink heart-shaped bandaid back there while no one was looking.”, I asked the nurse while pulling up my pants, “That’s what I’d do…”

“No, but maybe next time!”, she replied with a smile.

By the time I got home it felt like someone had kicked me in the ass where the shot was administered. Oh, well. It’s still far better than two shots to the belly.

So, that’s all for this year, folks!

2020 is going to be rough year for me, and to be honest, I’m scared. I’ve been feeling the best I have felt in months, and now with these new upcoming treatments, I am worried about relapsing. Fortunately, I have my family and friends. Their love and support have helped me more than they could possibly imagine. Thank you, it’s the best gift I could receive.

Have a Merry Christmas and a healthy, happy New Year.

– Scott

Previous : A Research Study

Next : I get to keep my hair, for now…

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