Category Archives: Cancer

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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