Category Archives: Cancer

Cancer Update 6: Why Do Good People Suffer?

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Why do good people suffer?

This is a long post with a lot of Christian content.  If you don’t want to read about Christian topics, then you should skip this post.

When we suffer, or when we witness suffering, it is natural to wonder “why do good people suffer?” I have certainly heard stories that beg for an answer to this question.  Since my diagnosis in early August, I have certainly wondered the same thing at times.  Why am I going through all this?

This also has theological implications. I am a Christian, and believe in God.  I’ve always tried to be a good person, and I think I’ve succeeded.  But I’ve been in pain for more than a year, and have had a very rough 2 months. If God is real, why would He allow this to happen to me? 

God never promised His followers that they would not suffer.  Indeed, this world is broken, and as His followers live in this world, they should expect to suffer along with everyone else.  In Luke 14, Jesus urges his followers to count the cost of following Him:

27 “And whoever does not carry their cross and follow me cannot be my disciple.”

So why would God allow suffering?  There are several possible reasons:

Freewill:
God designed us to be free creatures, and make our own decisions.  These decisions can cause ourselves or others to suffer.  God cannot eliminate suffering without also eliminating our own freewill.

To grow our character:
It is a reality of our nature that we do not grow and mature when things are going great.  When things are good, we tend to do the same things we’ve always done.  But when we suffer, we try and figure out how to change what’s happening to us. This may lead us to reexamine how we are living and make changes to our attitude or lifestyle. We don’t really grow unless we are suffering.

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. James 1:2-4

… we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us. Romans 5:3-5

To allow us to focus on important things:
Suffering allows us to focus on what’s important.  Occasionally in Southern California, we have a nearby fire that forces us to get ready to evacuate.  When this happens, everyone has to look around and decide what they really want to keep, and what they could live without.  For many, the list of keeper items is short, mostly pictures and computers.  Everything else can go. 

Timing:
We don’t have the full picture, and God knows far more about what is happening now, and what will happen in the future. Very often, we want things to be different, but it’s just not time yet.  The right thing at the wrong time is actually the wrong thing.  There are things happening that we don’t see.  The right timing can make all the difference.

The Mercy of God:
In the Sci Fi movie Minority Report, police can predict the future, and will arrest people for crimes they haven’t committed yet. The question of the film is, is it ethical to prosecute someone for something they haven’t done yet? Observing God’s actions in the Bible, the answer is clearly no. God allows human evil. He will punish evil, but because of His love for us, He waits a long time to do it, sometimes longer than we want. He is waiting for us to turn away from evil, to repent, so that He can have mercy on us.

In the book of Jonah, God sends Jonah the prophet to preach to the Assyrians in Nineveh (now the city of Mosul in Iraq). The Assyrians were the most vicious and cruel conquerors of the time. Jonah justifiably hated the Assyrians.  But God loved even the Assyrians and wanted to give them one last chance before destroying them. God withheld the punishment of the Assyrians because He wanted to have mercy on them!

Read the short book of Jonah to find out what happens!

To activate us:
We had a friend and pastor who was one of those “crotchety with a heart gold” types.  He was usually grumpy, but he was also usually working hard to help people make their lives better.  He had a special gift with the military recruits at Camp Pendleton in particular.  When he passed away, we wondered, “what are we going to do without him.”  Then it struck me.  He had been teaching others to do what he did for years.  It was time for all those people he taught to start putting that training into practice.  Sometimes suffering helps us get going and do the things we’ve been trained to do.

I don’t know:
Another pastor was diagnosed with a brain tumor.  He was in pain for several years before he died.  To this day, I have a hard time with his death. I’m sure some of the above reasons apply, but I still have a hard time explaining it.  We have to admit, with our limited perspective, that we simply don’t know why some suffering happens.

Does God understand our suffering?
God knows firsthand the injustice of human suffering. We may think that God doesn’t care about our suffering because He’s up in heaven far removed from us.  But if Jesus was God in human form, then God experienced all of the suffering that we do.  His family was forced to flee as a baby and lived like refugees for years in Egypt, he lost a parent, he went hungry, he was lied about and betrayed by friends.  Finally, he was tortured to death using the most painful execution method in history.  When we think about the things we have suffered, we have to remember that God knows exactly what that’s like, because He has suffered them too. He knows firsthand the injustice of human suffering.

So why did He go through all that?  Hebrews 12:2 says:

2 …Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.

This verse says that Jesus suffered all that “for the joy set before Him.”  What is that?  What joy was set before Him?  Jesus suffered all that so that He could get you! He wanted an opportunity to have you in His Kingdom!  Not you as an abstract person, one of 8 billion people on the planet, but you personally.  This is why he was satisfied with what He did, all He suffered.  Because He gained the opportunity to have you, the opportunity to have you choose Him!

Many of you don’t believe in God, or can’t accept the idea that He exists.  I have a challenge for you.  If you really want to know, I challenge you to ask Him to show Himself to you. 

A warning!  God doesn’t do parlor tricks! He won’t do something simply to satisfy your curiosity!  But if you sincerely want to know, I guarantee that if you ask Him, He will show Himself to you.

If even one of you is in the Kingdom of God with me because of my suffering, because it caused you to think about life and death, it will be well worth it.

“For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison.” 2 Corinthians 4:17

Don’t fear, but be smart,
Erik

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Cancer Update 5: 1st Chemo, Tumors Shrinking

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I came home from the hospital on September 15.  It’s been great to be home! My focus has mostly been on healing, following directions, and getting ready for my chemotherapy sessions to start.  An ongoing issue has been that I lost weight in the hospital, which I should try and get back before chemo.

So I’ve been exercising as much as I can, going for short walks, and doing limited workouts in my chair.

Chemo
I had my first chemo session on Thursday, October 3, on schedule.  The infusion took about 2 hours, and everything went fine.  I’ll have 4 sessions total, each 3 weeks apart, the last one taking place on December 5th.

My first infusion. Yes, I’m saying “Let’s do lunch!”

Tumors Shrinking!
Thursday was a very busy day. After my chemo session, I actually had a late radiation session and a meeting with my radiation oncologist.  He told me that my tumors, both of them, were shrinking faster than anticipated.  Yes, both of them!  Even before chemo, he noticed that my primary tumor in my lung was shrinking as well.  It was shrinking about 3 times as fast as normal.  My doctor said “I can’t really explain such a change.” He seemed quite pleasantly surprised, and baffled at the some time.

Abscopal Effect?
If anything, he said he might attribute this to a phenomenon called the Abscopal Effect.  Basically, debris that is formed as the rib tumor starts to fall apart due to the first set of radiation treatments end up becoming material that the immune system uses to mount a defense against the second tumor.  The radiation starts killing the rib tumor, creating a vaccine that tells the immune system how to attack the primary tumor! Just to emphasize, even to my radiation oncologist, the Abscopal Effect is still theoretical, and is a very rare phenomenon to see.

I recently graduated from a walker to a hiking stick.

Today, Monday October 7, before my radiation treatment, they actually did a new mapping scan in order to re-calibrate because of the extra tumor shrinkage. 

In short, your prayers are working!  Thank you so much for your prayers and keep it up!  I actually need extra prayer because chemo is making it hard to keep food down. Hopefully this will just be happening the first week.

Don’t fear, but be smart!
Erik

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Cancer Update 4: Hunger, Undernourishment, and How to Fix It.

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Friends,
This is a cancer update.  I’ll talk about dealing with malnourishment, and how to make biomolecules.  This post contains significant Christian content.

Hunger
I was on several antibiotics to deal with my Granulicatella adiacens infection. Probably because of this, I was often nauseated and often couldn’t hold down my meals.  At one point, I couldn’t even hold down juice or even Ensure.  I started drinking Carnation Instant Breakfast, a powdered drink I discovered in college. Unfortunately, CIB doesn’t really have enough nutrition in it to drink it that much, but it’s the only thing I could keep down at the hospital. I started losing strength and muscle mass, and lost 20 lbs during my 2 week stay.

Studies were done during World War II on how to help people who are extremely malnourished.  Because I was also on antibiotics, I didn’t fall into the same category, but it did strike me that we were taking the wrong approach.  I intend to look into this more when I am better.

Adrenaline and how to get it.
Once my effusion was drained, my doctors were eager to send me home.  Unfortunately, whenever I tried to walk, my blood pressure would drop to an alarmingly low level.  As it turns out, I was no longer able to make my own adrenaline, a signaling molecule you need as you increase your activity.  I couldn’t even walk across the room without my blood pressure dropping.  One of my doctors said I had “adrenal insufficiency”, that my adrenal gland was not active enough for some reason. I had never heard of this in a person, let alone ever had this happen to me, so I was confused.

I’m going to talk about something that many don’t understand.  Many Christians “hear” God’s voice on a regular basis.  I hear it occasionally, maybe every 2 months or so.  For me and many other Christians, this voice presents itself as a very strong idea that pushes other ideas out of your head for a moment.  When Christians say God spoke to them, this is what they mean.  I am an analytical person, so of course I have criteria for knowing when God is speaking to me.  These criteria are:

It’s not an idea you would normally have.  God’s voice has an “out of the blue” quality, like something you would never normally think about. And yes, often it’s an idea that you don’t like, like having to apologize to someone for something you did or said. God doesn’t have to tell you to do something that you already want to do!

It’s clear. Sometimes other people will say something that confirms what you heard, like using the same unusual wording that God used with you.

It matches the Bible.  God will never tell you something that does not match what the Bible teaches.

Kathy was at home and God told her that I needed to expand my diet.  Not knowing what that meant, I started with eating more colorful fruits and vegetables.  It is well known that different colors in foods mean that that food contains different molecular nutrients.  Orange foods tend to have lots of Vitamin A, acidic foods tend to have Vitamin C, purple and blue foods have lots of antioxidants, dark green vegetables often have lots of Iron, etc.  Over the next few days, I still couldn’t hold down protein like eggs and meat, but I was able to eat a variety of colorful foods.

The following day, I was able to walk without my blood pressure dropping.  The day after that, Sunday, September 15, I was finally sent home!

Don’t fear, but be smart,
Erik

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Cancer Update 3: Complications, Insurance, Opioids.

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On Sunday, September 15, I got out of Scripps Encinitas Hospital after a 2 week stay.  In the next few updates, I’ll tell you what I was doing there and how I’m doing now. 

Complications
On Sunday, September 1st, I was experiencing a lot of pain, sometimes 8 on a scale of 1-10.

We went to the ER and after some testing, they discovered 2 major complications. 1 was a pleural effusion, a bag of fluid between my lung and chest cavity that was limiting my lung capacity. The pleural cavity is usually a very narrow cavity between the lungs and the rest of the body.  Just around the lung is a thin tissue called the parietal pleura.  Normally, this cavity contains just enough fluid to allow the lungs to glide along this tissue as they expand and contract.  Sometimes, however, this fluid inside this cavity doesn’t drain properly, and fills will fluid.  This is a rare condition.  The problem with this is that the extra fluid can compress the lung and reduce lung capacity, making it harder to breathe.

They had to install a chest tube so the fluid could drain.

The inside of the lung is actually “outside” the body, because it is open to the outside world. The pleural cavity is just outside the lung. This is the area that can fill with fluid to create an effusion.

Additionally, they found an infection, a bacteria called Granulicatella adiacens, a species that is difficult to grow in a lab, and so unknown even to most microbiologists.  The infection was related to the effusion, so the next day, they put in a chest tube so they could drain fluid from the effusion.

So now instead of one potentially deadly condition, I now had 3.

Insurance
When Kathy lost her job last year, we lost our traditional health insurance, which was really good.  We signed up for a cost sharing program.  To use one of these programs, you need to tell medical providers that you are self-pay.  You pay everything with cash or credit card.  You get an itemized receipt from the provider, then submit to your program.  We will get reimbursed by our program roughly 3 months after we pay the expense.

There are big pros and cons to these programs.

Cons:

1. Cost sharing programs are new, so most providers still don’t know how to handle them.  They reflexively want to bill insurance, so they are always asking what program we have. To prevent them from sending our program a bill, we always just say that we’re self-pay.

2. It’s almost been a full-time job for Kathy to collect itemized bills from hospitals, individual doctors, and laboratories.  Happily, Kathy is running her art business full time now, so she has the flexibility to do this.

Pros:

1. Providers usually give huge discounts for self-pay.  My recent hospital stay was expensive, but we will get a 50% discount.

2. The monthly cost of our sharing program is far less than insurance premiums for the both of us for the month.  So we actually opted not to get insurance from my new job.

3. One big problem with health care is that you can’t just ask your provider how much something costs.  Insurance companies still cut mysterious deals with providers, so no-one seems to know what anything costs.  Cost sharing programs may be a way around this.  We get bills with actual numbers on them for the services we use.

First world countries have a variety of approaches to health care.  Nationalized services have the problems of high taxation and long waits for care.  The US now has high costs for insurance premiums and high deductibles.  I think cost sharing, when it’s more accepted, may be the future of health care payments.

Opioids
I started taking opiate medications, which made me mildly hallucinate and become nervous about addiction.

I’m not at all excited about taking opioids.  Coming in several forms, opioids are highly addictive, and have other unfortunate side effects.  I’m a very disciplined, type-A person, so I’m hopeful I won’t have too much trouble working my way off of them, but friends who have done so say it took them some time.  I also have friends, very good people, who ended up having to go to rehab so they could be supervised.  You can certainly pray for me during this process when the time comes.

If you end up having to take opioids, make sure you work with your doctors to find the right regimen, and follow your doctor’s orders.  You can change your prescription and orders, but don’t take more than your doctor prescribes.  This will help keep you from having trouble.

Erik

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Cancer Update 2: Treatment Plan

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At the risk of narcissism, I’m going to continue to give detailed updates on my cancer fight.  My struggle will not be nearly as dramatic and harrowing as many of yours have been, and I have no right to be a “cancer celebrity” that others don’t have.  However, I have lots of friends who want detailed updates, and I sense that many of you are finding my open approach valuable.

I am writing these updates for those who are interested, and definitely not for those who aren’t.  Lots of people find it very valuable to have a chance to discuss these issues with someone openly.  For others, painful memories or feelings of missed opportunities make it difficult to think about or discuss cancer.  So you have total freedom to ask questions, and also to not read or interact with these posts at all. No one knows what to say, and you don’t have to say anything if you don’t want to.

So here’s the update.  We met with my 2 treating oncologists this morning.  For some reason, my pain was more intense today, and I didn’t sleep much last night. So it was difficult being driven around town today.  We met with the chemo doctor first.  A somewhat unique feature of my tumors is that while one of them is “metastatic”, arising from dislodged cells from the primary tumor, there is only one of these secondary tumors.  Usually, there are many more.  This makes me a good candidate for chemo and radiation.  Both tumors can be treated with radiation, and then the chemo will do the rest, and mop up any microtumors that might be hiding in my body.

PET scan of the primary tumor in my lung. The tumor is actually on the right side.
PET scan of the secondary tumor on my rib. The tumor is on the right side.

I’ll get 4 infusions, every 3 weeks, probably starting next week.  I will have a compromised immune system during this time, so may be limited in my outings.  I don’t have details on this yet, so I might be OK to socialize during parts of the process.  My tumors don’t have any terribly unique genetic markers, so I’ll just get the standard agents for this type of cancer.  After the traditional chemo, I’ll get a new therapy called Immunotherapy, which encourages your immune system to attack the cancer.  I haven’t discussed in detail how this might interact with my autoimmune disease (celiac disease) so we may need to modify this approach a bit.  If everything goes smoothly, I should be all done with this process in early November.

This will be a moderately aggressive treatment, and I should tolerate it OK.  Nausea should be relatively mild, and I may not even lose my hair!  This is a little disappointing, since I was kind of hoping that after all this is over, I might get my majestic brown curls back!

I have day dreams that after chemo, I will get my majestic brown fro back! Sorry, Chris, if you want your hair back, you’ll need to get cancer. Sadly, I may not lose my hair, so my dreams may be dashed. (While was approaching the stage to give announcements at the Lost Creek Ranch at Forest Home, Lisa Johnson would say “Here comes Erik P Johnson. Isn’t he majestic?” Somehow I found the ridiculous over the top description hilarious, and I still like to use that word to this day. Thanks, Lisa!)

Photoshop credit, Broose Johnson

Then we met with the radiation doctor.  Radiation will start as early as this week.  I have a targeting appointment tomorrow, and the tumors will be precisely mapped out, and I’ll get little tattoos so they can orient my body in the machine.  So for all of you who have wanted me to cave to the trend and get a tattoo, this is your chance!  They’ll start with the tumor on my rib first, as this is where most of my pain is coming from.  So after next week, I should be able to improve rapidly in that regard. I may also get some radiation for my primary tumor in my lung later on.

My 4 new boss tattoos. They are quite small. A. Bison B. Fishing in the Sierras with Chris and Dan, Onion Valley. C. A heart, with “Kathy” written in it. D. Portrait of infectious disease and free speech hero, Ignaz Semmelweis.

So my treatments should all be done by Thanksgiving, and I’ll be feeling much better after next week!

Thanks for your continued prayers!  We are feeling surrounded by God during this time, and very blessed by all the support we’re getting.  So thank you!

Don’t fear, but be smart,
Erik

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