How are you? : An FAQ

I'm going to try to answer the question that comes up frequently, and a couple other questions that I think will come up, or at least be thought about once I send this blog out to people who want to be kept up to date on my health.  First up is the big one.

Q: How are you?

A:  I've had some bad days in my life.  For example, my mother was diagnosed with Stage IV metastatic breast cancer in April 2009.  That was a bad day.  She died from said cancer in September 2012.  That was another bad day.  There have been other days that were bad, those I'll keep to myself.  But believe me when I say that the day I was officially diagnosed with Stage IV metastatic lung cancer was the worst day I've had.  The same is true for my wife and kids.  That day lasted from April 27 until May 18, when we got a glimmer of hope from the oncologist in terms of treatment.  On May 19 I started on Tagrisso (a third generation tyrosine kinase inhibitor) and on May 20 I had my last thoracentesis.  Since then I've felt pretty good physically.  Certainly better than I have since January.  The Tagrisso has had some side effects, but for me they've been mild and very manageable.  Fatigue has been the biggest one so far.

Emotionally it has been a roller coaster.  Being diagnosed with a life threatening illness with an uncertain outcome at age 52 will throw you for a loop.  I've been through every emotion known to humans, and I've stared straight into the abyss of mortality.  I've reassessed some things in my life, mostly having to do with where I spend my time.  As of late June 2021 I am doing OK.  There's probably a bit of acceptance in there, helped along by the fact that I feel better and am likely to be around for a while (where "a while" is defined as anywhere from 1 year to 15 years & longer).  Some days are better than others.  But everything I do now is within the context of an uncertain future.

Q: Why a blog?  It seems so ... impersonal.

A: It is, certainly, a bit impersonal.  But here's the thing.  I can't answer the "How are you?" question all the time.  I just can't.  If I hear it too many times I will retreat back to "Fine" as an answer, just to avoid rehashing the same conversation.  I have to talk about my health and related issues with my oncologist.  After that I will talk about my health with my wife, my 2 kids, my father, my 2 brothers, and my uncle.  That's already at least 6 times I've had to talk about how I am after every appointment with my oncologist, within the context of the worst thing that  has happened to me personally.  Rehashing it is exhausting, and at this point it's just not something I want to do.  I'm happy to text/email/talk with anyone about anything, except this.  So I am going to post updates when I get them to this blog, and I will go into as much detail as I can at the time.  If you end up with a specific question or want more details about something, comment on the blog and I'll try to answer.  Google can answer some specifics, and I may randomly link some stuff.  The other piece of this is that, now that I have started treatment and we have some evidence that it is working (specifically, the fluid in my pleural space is not building up any more, or is building up much much slower, allowing me to take full breaths), things don't change that quickly for me physically.  Right now the answer to how I am doing is "pretty good", at least from a physical standpoint, and from a mental/emotional standpoint, see above.  Don't wanna rehash it.

Q: What is your prognosis?

A: Dunno.  Worse than it would be if I did not have Stage IV metastatic lung cancer.  There's all kinds of statistics out there, some outdated.  Tagrisso has been through clinical trials so you can find things like mean time to progression and mean overall survival rate.  But statistics are meaningless when applied to an individual.  None of the statistics can tell me specifically how I will respond to treatment and whether or not we will get to No Evidence of Disease (NED, the best I can hope for with Stage IV).  So right now we are taking this one scan at a time.   I'll have a set of scans and those scans will tell us if the cancer has progressed, stayed stable, or retreated.  If it's stable or retreating we stay with the treatment we're on.  If it's progressed, we reassess and maybe switch treatments.  Then scan again and repeat.  This will be the pattern for as long as I'm in treatment.

I hope this has answered some of your questions.  Feel free to ask if I didn't.

The Story So Far

Right, so how did we get here?  Excellent question, and I'll try to lay it out succinctly.

In January of 2021, I started to not feel well.  Heaviness in my chest, a cough and shortness of breath were my main symptoms.  As we were in the middle of COVID at the time, I went and had a COVID test.  It came back negative, so I assumed that somehow I had managed to come down with a cold.

In February of 2021 (February 12, to be precise), I was still not feeling well, and the shortness of breath was slightly worse.  So I went to Urgent Care.  They of course gave me another COVID test, which again came back negative.  They also x-rayed my chest, and found what looked like pneumonia.  This resulted in them sending me for a CT scan.  When the results came back, the doctor told me I had COVID-19 pneumonia and that they were seeing the same results on the CT scan 15 times a day for other patients that tested positive for COVID-19.  So they sent me home with some medications to try.

By March, I was still not feeling better, so everyone (doctors included) concluded that I must have long COVID and that I would just have to wait.  The doctor from February had told me that the cough I had would last 3-6 months.  So I just tried to wait it out, all the while being short of breath.  Talked to my primary care doctor, and we tried some other antibiotics in case the pneumonia was bacterial or in case a secondary infection had set in.  Since I had been officially diagnosed with COVID, I couldn't come in to the office for an in-person exam.

 So April rolls around and I am getting worse.  Coughing so much I injured a muscle in my ribs, and breathing is getting harder.  My doctor finally says to come in for an exam.  I do, on my 52nd birthday.  He sends me out to get chest x-rays again.  He also schedules me with a pulmonologist ASAP.  X-rays are on the 21st, with the results being posted on the 22nd.  This is the first time the word "cancer" is brought up in relation to my condition, though the radiologist also states that untreated pneumonia could also cause the same thing.  The x-ray shows a pleural effusion. I meet with the pulmonologist on the 23rd.  I have a thoracentesis procedure done in which they pull 900ml of fluid out of my pleural space.  This helps with my breathing, but not as much as I'd hoped.  The pulmonologist disagrees with the COVID diagnosis, and tells me that since only one of my lungs is involved instead of both, this points to something "more ominous".

 April 27, the pulmonogist calls me back with the results of the tests on the pleural fluid and tells me that they found adenocarcinoma cells in the fluid, and that it's lung cancer.  I am stunned.  My family is also stunned.  He gets me in with an oncologist for May 3.  In the meantime, I have discovered the phrase "malignant pleural effusion".  I do not recommend googling that phrase.  I spend the next few days believing that my meeting on May 3 will be a confirmation of a short remaining lifespan.

May 3, meet with the oncologist.  She is a lovely woman, Kirsten and I both really like her so far. She more or less immediately sets Kirsten and my minds at ease.  I'm young (compared to the average age people are usually diagnosed with lung cancer), and otherwise healthy.  Yes, it is Stage IV lung cancer, we don't know the full extent of it, but she is convinced that there is a genetic mutation driving this rather than something environmental, and since I had quit smoking 27 years ago smoking wasn't a factor either.  The good news is that the last 5-10 years have seen the development of several treatments designed to specifically target mutations that cause lung cancer.  So she wants to wait until the results of the genetic testing come in before starting any kind of treatment.  And even though my shortness of breath is back and worse than ever, she wants me to wait as long as possible before I have another thoracentesis, as too many of them in a short period of time can cause the fluid to be stuck in individual pockets ("loculated" I believe is the term) and it becomes much more difficult to deal with.  I leave the appointment feeling marginally more optimistic and short 9 vials of blood.  I also have an MRI and a PET scan scheduled to see if and where the cancer has spread.

The next 2 weeks are an agony of waiting.  The oncologist told us the genetic tests would take 2-4 weeks.  2 weeks and one day later she calls me with "the best possible news", which is that the cancer I have has an EGFR mutation called exon 19 deletion and that I can be treated with a medication called Tagrisso.  This is a once a day pill that is tolerated very well (meaning the side effects are generally mild, especially compared to chemo and radiation treatment). The next day I have a 30 day supply and start taking it.  The day after that I have a thoracentesis, which hurts a bunch that day, but then improves my breathing immeasurably.  

We get the results of the MRI and PET scans back.  The good news is my internal organs are "unremarkable", meaning no signs of cancer on them.  The bad news is there are small tumors on my brain, and larger ones on some of my bones.  Spine, sacrum, hips, and femurs.  We consult with a radiation specialist about something called a "Gamma knife" treatment for the very small tumors in my brain, but we decide to delay that for a couple months to see if Tagrisso will take care of them.  Her exact words were "You have weeds, this is weed-killer."

So we're up to date now.  I've been taking Tagrisso now for over 30 days, the fluid on my lung has not built back up, and I'm breathing and feeling better than I have since January.  My oncologist believes that the fluid not coming back is a sign that the Tagrisso is working.  We won't know for sure until the next set of scans, which occur on July 22.  We will get the results on July 27, when we meet with the oncologist again.

There have been a few side effects from the Tagrisso.  The biggest one for me has been fatigue, and I find that taking evening walks with Kirsten or Maya or Dylan helps with that quite a bit.  I've also got a bit of a rash on my face that is caused by Tagrisso.  It isn't bad, but I do have to avoid the sun.  I also drink much more fluid than I ever have in the past.

 Thank you to everyone who has sent words of encouragement and food and gifts to us.  It has been enormously helpful and quite moving and I and my family appreciate it very much.

 Next update will be after the scans & meeting with the oncologist.  Sometime after the 27th of July.