Category Archives: Cancer

Cancer Update 12: Post Treatment PET Scan

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Friends,

On Monday, I went in for my PET scan.  In this procedure, radioactively labeled sugars are injected and allowed to be taken up by cells in the body.  Because cancer cells particularly love sugar, the radioactivity mostly ends up in the cancer cells.  Scanning for radioactivity highlights the location of tumor tissue.

While not gone, the size of the lung tumor is much reduced. The chemo agents will continue to work for a few more weeks, and the immunotherapy will take care of the rest. Prognosis remains good!
While some concentration of sugars is apparent at the rib site, my oncologist said the rib tumor is essentially gone.
A 3D image, before and after for both tumors. The rib tumor is essentially gone. Technically, the dimensions of the lung tumor is a little smaller, but you can see that the tumor is much narrower and smaller by mass.

Earlier this morning, we met with our oncologist, and he was very happy with the results!  There is some of the lung tumor left, but the rib tumor is essentially gone.  He said we won’t need to do any more chemo, but we will continue with the immunotherapy.  Even though we’re all done with chemo, it will actually continue to work for a few more weeks. 

Since immunotherapy is so new, it’s not really known how long it we will use it.  The initial studies were done for 2 years, so he’s saying we’ll potentially go for 2 years, but he also said there’s a good chance we’ll stop early, depending on how things go.  I’ll get another PET scan in March to see how things are going.

So the news is good!  I still have limited lung capacity, which I’m looking forward to getting over, but I’m steadily improving if slowly.  My visits to physical therapy are producing improvements to my posture and strength too.

Thanks for your continued prayers!
Erik

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Cancer Update 10: Last Chemo Infusion, First for Immunotherapy

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This is a cancer update.  Yesterday I had my last of 4 expected chemo infusions, and my first of many immunotherapy infusions.  I mentioned before that I take an anti-side effect medication for the first weekend, but I’ll be fatigued for some of next week.  There may also be some additional side effects from the immunotherapy, Keytruda.

I’ve been very cautious about getting sick up until now, since I didn’t want to have to postpone treatments.  But after next week, I’ll probably start being more free to “move about the cabin” as it were.

Writing this very blog, earlier today! Broose and his wife Penny bought me this sweet chair, which practically dumps me out of the chair if I want. Super comfy!

This last round has not been without drama.  On the Sunday right after my last infusion, I passed out twice within a few minutes of each other.  I was probably only out for a few seconds both times.  I ended up going to the ER but my visit there was actually pretty uneventful.  They couldn’t really find anything, and said it was pretty much just the chemo.  So Kathy took me home after a few hours, and I’ll just need to remember to get low right away if I get lightheaded again. We’re always thankful when they don’t admit me!

My chemo side effects have been quite mild, which I’ve been very happy about.  I threw up a lot after the first infusion, but not the others, which is great.  I have another kind of amusing side effect of chemo that I’ve never been aware of.  My skin is shedding a lot, kind of like full body dandruff!  Kathy jokes that it’s like having her own personal snow globe!  Every time I change my clothes, there’s a flurry of “snow” as I fold them!  Kathy even says that I look younger with reduced age spots!  And no, I don’t recommend this method of exfoliation! Anyone else have this side effect?

After a low weight of 165 lbs, I’m back up to 180, which is great.  I’m going to take a little pause from the weight gain until I can start meeting with my physical therapist on the 16th.  My target weight is 190 to 195, and I want to put on some muscle instead of fat!  So I’m cutting back from 2 bowls of ice cream a day to just one!!  Favorites are Mint Chip, Mocha, and Cherry from Tillamook.  This is just an interesting detail.  Please don’t leave a bunch of ice cream on my porch!

A little detail about my daily life is that we love Gospel music and I’ve have fallen into the habit of waking up to “You are the Living Word” and “Give Me a Clean Heart” by Fred Hammond. They’re great songs, with great bass lines, of course.  I try and get out of bed before the first one is over!

Back to the medical side, my prognosis remains good and my tumors are shrinking faster than anticipated.  I’ll get a PET-scan on the 30th.  For this test, I have radioactive sugar injected, then wait 45 minutes for the cancer cells to suck it up.  Cancer cells love sugar, and quickly absorb the radiolabeled glucose.  Then I get scanned in a specialized scanner and see how the tumors look.  PET scans are the most sensitive way to detect tumors and allow doctors to see even small tumors wherever they are.  My chemo oncologist expects that my rib tumor will already be completely gone, and that my primary lung tumor will be much reduced.  The chemo will continue working for awhile, and the immunotherapy will continue for to up to 2 years!

A word on immunotherapy.  As mentioned in Update 7, immunotherapy agents cause T and B cells to attack tumor cells.  Some tumor cells express a surface protein called PD-L1.  This protein causes the immune system to see the tumor as “self” by binding to the PD-1 protein on T and B cells.  Keytruda stops these proteins from binding to each other, causing the T and B cells to see the tumor as alien.  Unfortunately, this can cause some normal cells to appear alien as well, leading to some side effects.  My autoimmune disease is not expected to be impacted by all this, but I’ll need to be monitored to make sure.  My oncologist says that since my tumors have a lot of PD-L1, this therapy may work especially well on my tumors.  Depending on how I respond, I may end up being on Keytruda for up to 2 years!!

Please continue to pray that my tumors will become normal lung tissue and not scar tissue.  I’ve also had some shortness of breath for the last 2 weeks, but I’ve seen some improvement over the last few days.  Pray that my lung capacity improves!

Merry Christmas and Happy Hanukkah,
Erik

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Cancer Update 9: “Wednesday”

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Friends,

Today, I just have a brief update.

My 3rd round of chemo started with an infusion yesterday. For the first few days of a new round, I’m on some extra medication that counteracts some of the negative side-effects of the chemo agents.  So while I’m on those medications, I’m actually feeling really good!  Those medications will run out on Sunday, so starting Monday is when I start “Fatigue Week”, which for me has been just sleepiness.  Until then, I’m actually feeling good and can do my normal 2 short walks a day, and even do my stair exercises.  “Fatigue Week” has generally lasted just from Monday to Thursday or so, and then I’ve been turning a corner on Friday, which I expect to happen this week as well. 

I usually go on 2 short walks a day. Then I do 5 sets of stairs after my walk, trying to regain muscle mass after my long hospital stay. It’s already making a difference!

I caught a very mild viral infection this time, and had to be more strict on having visitors.  Fewer visitors, and always meeting out on the patio from now on.  Despite that, my White Blood Cell count remained fine for a person on chemo, so my 3rd round started on time.  I also finished my radiation treatments on Friday, November 8th, so I’m very happy to be done with that.  Now it’s just chemo, and immunotherapy starting with my next chemo round in early December.  People tolerate immunotherapy very well.

Because I’m halfway through chemo, Kathy remarked that it felt like “Wednesday”, like we just have to endure a few more days before the welcome end.  Everyone from students to adults in the workplace know what that feels like!

Right now, I’m thinking as if my chemo journey will end around December 14th, when I’ll emerge from my “bad week” for that round.  Then I’ll need to start working out, regaining the strength I lost while in the hospital.  It’ll take me a few months to get back to my ideal weight, and be ready to travel again.  So by Christmastime, I should be mostly back to normal.

Results continue to be very good, and my prognosis remains very good!

Thanks again for all your prayers!  We continue to pray that my tumor tissue will become lung tissue, and not just scar tissue, to maximize my hiking, backpacking and skiing abilities, some of my favorite activities!

Also pray that my broken rib will heal quickly! We still have no idea how long it will take, but it will be much longer than the usual 6 weeks, since the pieces are not sitting right next to each other yet, but have to grow together before they can mend.

Don’t fear, but be smart,
Erik

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Cancer Update 8: 2nd Round of Chemo, New Walking Stick

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This is a super brief update! I’m in my first week after my second infusion. I was concerned that since it’s my second round, that it might be worse than the first. But Kathy reminded me that I’m in much better shape going into the second round than I was during the first.

When I got out of the hospital, I could barely walk 25 yards and get back home! Now, I can walk about a quarter of a mile uphill, to a nearby street corner. Kathy was right! Aside from some sleepiness, this round is indeed much better than the first. This makes me optimistic that my 3rd and 4th rounds will be better still, especially since I’ll be done with radiation at that point.

I’m able to hold down food, and I’m stoked to report that I’ve actually gained 5 pounds over the last week! My job is literally to eat and drink right now, so I’m glad I’ve been successful! Pray that I can continue to gain weight, and that my broken rib will grow back together nice and straight!

Also please pray for my wife Kathy. Patients get all the attention, but caregivers bear a great hidden burden during this time. Pray for perseverance and peace!

My good friend Chris McGaugh made me a new walking stick! He made it from Douglas Fir, my favorite tree, and delivered it this morning.

InterVarsity folks, the rock set into the top of this custom walking stick is from Campus by the Sea!

Don’t fear, but be smart,
Erik

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Cancer Update 7: Start of Round 2, How do Radiation Therapy, Chemotherapy, and Immunotherapy work?

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I’m going to share a brief update, and then give you some information on how my treatments work!  In my private discussions with some of you, there is some curiosity about radiation, chemo, and the immunotherapy that I’m using to get well.  So I thought I’d give some details on those things.

I also want to say before I start, that I’ve also learned from several of you that you are going through your own journeys with major health problems right now, including cancer.  Know that I am praying for you!  May God take care of you just as He has been taking care of me!

Update:
My first infusion was October 3rd. The nurse told us that the worst days were 4-10 days after infusion and she was right! I was miserable and wiped out the following Tuesday!

I’m doing much better now, and enjoying the break. My next infusion is this week, on the 24th. I’m half way done with radiation treatments on my primary tumor, and my last radiation is on November 8th. So my last 2 infusions will happen after radiation is over. So this next one will likely be the worst, but the last 2 infusions are likely to be easier than the first 2!

My last infusion is on December 5th, and I’m looking forward to feeling much better in December.  Hopefully by Christmas, I’ll basically be back to normal.

My pain is low enough now that I’ve started to work myself down from the opioids, which is lowering some of the negative side effects from an already low dose.  The doctors are pleased at this news! I’m also able to eat more, so I’m working on gaining some weight. 

We are so thankful for the support of friends and neighbors that we continue to get.  Your prayers have been an important part of my progress, so keep it up!

Radiation:
Radiation is a common cancer treatment because it’s less invasive than surgery, but it’s still quite effective at killing cancer cells.  It works by damaging the DNA of cancer cells, leading to the self-destruction of the cells. 

X-ray radiation is the most common.  An emitter looks like a giant microscope and moves around the patient, firing hundreds of X-ray beams in sub-lethal doses.  Only the tumor receives a lethal dose of X-rays. The CT scan measurements are exact and treatment plans are done by a physicist for each patient. In fact, a physicist and doctor need to be present and approve how the machine is lined up with the tumor every day before they start the radiation treatment!

An X-ray therapy instrument. The large piece with a glass pane right behind the patient’s head is a CT machine that does a mini-scan every time I go in, to make sure that my body is properly aligned with the map that they have. The gray plate on the right detects the x-rays from the CT machine after they go through the patient.

Inside the instrument, an electron beam is created by a cathode ray tube, much like the ones that used to be in the old tube televisions.  The electron beam strikes a tungsten plate  The electron beam is absorbed by the plate and transformed into X-rays that are emitted by the tungsten plate.  These X-rays then pass through a lead aperture that shapes the beam into just the right configuration for the shape of the tumor at that angle.  This aperture is made of lead “leaves” that actually move to shape the beam as the emitter moves around the patient.  Yes, I can actually see the aperture changing shape as the emitter moves around me! 

Inside the instrument, an electron beam (B) is created by a cathode ray tube (A), much like the ones that used to be in the old tube televisions. The electron beam strikes a tungsten plate (C). The electron beam is absorbed by the plate and transformed into X-rays (D) that are emitted by the tungsten plate.

These X-rays then pass through a lead aperture (E) that shapes the beam into just the right configuration (F) for the shape for the tumor at that angle. This aperture is made of lead “leaves” (G) that actually move to shape the beam as the emitter moves around the patient.

Yes, there is a risk that the X-rays themselves will cause a new cancer tumor to form, but the likelihood is that if one does, it will take many years for the new tumor to cause a problem, after the patient will have passed away from natural causes.

Proton beam radiation is much less common and much more expensive than X-ray treatment.  Protons can more easily be concentrated on the tumor and are less likely to cause a new tumor.  For these reasons, proton therapy is more commonly used on younger patients, to avoid the likelihood of producing a new tumor within the patient’s lifetime.

Chemotherapy:
Normal human cells have many molecular checks to their growth, making sure the cells don’t get out of control.  Cancer cells have mutations that turn off these checkpoints.  This is why cancer cells grow rapidly and can become dangerous.  Chemotherapy agents selectively kill cells that are growing rapidly.  Since cancer cells are growing very rapidly, chemotherapy agents kill them first.  Unfortunately, some normal cells in the body grow faster than others, like hair, gut, and blood cells.  This is why patients can lose hair, experience nausea and digestive problems, and suffer from low blood cell counts, or even become immunocompromised. 

The good news is, on balance, chemotherapy is usually very effective at killing cancer cells, and many people have been saved through the use of these agents.

As I said in my first 1st update, Next Generation Sequencing (NGS) testing can help doctors know if a patient will need to use certain chemotherapy agents.  My tumors don’t happen to be particularly interesting in this regard, so I’m just getting a “normal” first try set of chemotherapy agents.  NGS has definitely increased the survivability of cancer by helping chemotherapy work on the first try!

Immunotherapy:
The PD-1 protein exists on the surface of certain T and B cells of the immune system.  They work to inhibit the function of these cells in most conditions, making them tolerate “self” cells in the human body, helping to prevent autoimmunity.  If a person has cancer, “turning off” these proteins can make these T and B cells no longer recognize cancer cells as “self”, and attack them!  Immunotherapy agents like Keytruda inhibit the PD-1 protein, causing the immune system to attack some tumor types, like the cancer I have, non-small cell lung cancer.

Prayer requests:
I’m doing much better eating, and my goal is to maintain my weight through the next round of chemo, and to gain some after that.  Pray that I will be able to eat enough calories for that!  Thanks!

Don’t fear, but be smart!
Erik

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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

All Articles, Cancer

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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