Health Update 07/21/2022

 On Monday July 18 I had an MRI on my brain.

As you may recall, when I was first diagnosed, I had a number of metastases in my brain, the largest of which was 6mm.  The report at the time said "Multifocal small rounded foci of enhancement in both the supratentorial and infratentorial brain indicative of brain metastases."  At the time, having metastases in my brain was the scariest part of having stage IV lung cancer.  The not being able to breathe and the pain from the tumors on my spine were both bad, but hearing that my brain was compromised was the worst.  I'm a knowledge worker (software), so if my cognition is compromised my ability to make a living is also compromised.  Additionally, brain injury can lead to personality changes, frequently in a negative way, so I was imagining the worst in terms of how I would change and what my family would have to put up with.  I read a lot, so I was afraid I would lose my ability to do that.  I'm prone to introspection and contemplation, and its hard to do either of those when the tool you use to do it is compromised.   The short version is I was afraid I would lose my self, and not in the good "I've achieved enlightenment" kind of way.

Luckily, Tagrisso was available, and is the first drug of its kind that crosses the blood brain barrier, and was extremely effective in cleaning up the brain metastases. Two months after I started with Tagrisso, the metastases were all gone.

That remains the case, as the most recent report reads "There is no evidence of malignancy".

Next up for me is a PET scan in early September to look in on the rest of my body.  But first, we will celebrate the continued good results.

Health Update 05/26/2022

 I had another PET scan on Monday May 23rd to take a peek into my body to see if the Tagrisso I'm taking is still working.

It is.

No sign of any active cancer, within the limits of medical science's ability to detect it.  So, in another 3-4 months I'll have another PET scan, and in the middle of July I'll have another MRI to check to make sure my brain is still there clear.

 In the meantime, WOOHOO!

A Dubious Anniversary

On April 27, 2022, it will be one year since I was first officially told I have lung cancer.  My first inkling that something more serious than COVID was going on came on my 52nd birthday, April 21.  That was the X-ray that showed the large pleural effusion, with the radiologist stating "concerning for lymphangitic cacinomatosis".  It turned out to be adenocarcinoma of the lung, but nonetheless a scary thing to read on an X-ray report.  So my pulmonologist called me on the 27th to confirm that it was indeed lung cancer, and got me in with my oncologist on May 3rd, and this whole journey got started.

So how am I now?  Physically I am decent.  Some side effects, I have less energy than I used to, and I am in a continual battle with the mental and emotional effects.  So it does seem sort of ...weird... to be celebrating (or more precisely, acknowledging) that a year has passed since I was diagnosed.  However, everything I read between April 27 and May 3 last year led me to believe that I had 3-12 months left to live, and at the time I physically felt very much like I was dying so it was not hard to believe.  Exhausted, coughing, barely able to go up a flight of stairs without having to take a break halfway up, weird visual disturbances from the brain metastases.  Nothing really pointed to anything other than that I was very sick, so a terminal diagnosis, while devastating, was something that I could believe was true based on how I felt.

So it is with great happiness and gratitude that I am celebrating still being here one year later, and frankly in pretty good health.  Within the context of the worst luck I've ever had, I have since been extremely lucky.  Lung cancer treatment has progressed to the point where so far, the only treatment I have had is a once daily pill (Tagrisso, a third generation tyrosine kinase inhibitor specifically for treatment of lung cancer that has a targetable EGFR mutation, and the first TKI that crosses the blood brain barrier).  This treatment has so far been extremely successful in that there is no detectable cancer in my brain and body at this time.  I have an employer that has not only provided excellent health insurance for me and my family, but who also gives me the time off I need to go through all the appointments I've had, particularly in the beginning.  I have a family that I love very much and who loves me, and without their love & support this whole ordeal would be much much harder, if not impossible.  I have friends that are extremely supportive and helpful.  I have the New Mexico Cancer Center and my team of doctors, nurses and support staff there, who have all been extremely kind, helpful, and most of all professional and competent in exactly the way one would want when dealing with Capital-C Cancer.  Should any of you reading this ever find yourself needing cancer treatment (and I sincerely fucking hope none of you ever do), I whole-heartedly endorse and recommend the New Mexico Cancer Center as the place to go.

 And I have Kirsten, whose love and support has helped me immeasurably through this past year with my physical illness and my grief, fear, and anxiety through all this, even though she is also dealing with her own grief, fear and anxiety.  With her I feel like I can withstand all the slings and arrows of outrageous fortune that have come my/our way over the last few years.  She and Maya and Dylan give me all the motivation and strength that I have needed and will need to endure.

It's easy, when faced with a diagnosis of this seriousness and magnitude, to get bogged down in the negatives.  Why me, angry at the world, grieving everything you will lose, etc etc etc.  And I have.  But here's the thing: while doing that, you are missing out on the moments flowing past you all the time, squandering what time you have left on fear of the future.  And so I have been working lately on not doing that, on enjoying what I have now when I have it.  On finding the joy and contentedness in my daily life, with my family whom I love beyond all else, at my job that I enjoy so much that I've been doing it for 23 years with no intention of stopping until I'm forced to, with my friends when I can (even though they keep moving out of town), with my many (many many) pets.  Life, in short, with all its beauty and ugliness and in-between.  Its all part of Life's Rich Pageant, to quote a scene from A Shot In The Dark (or to quote an REM album title that came from a scene from A Shot In The Dark).

With blogs like this, or social media posts, there is a tendency to edit and curate your life so that only the best bits show.  Look how courageous and strong I am as I go through this terrible ordeal with a can-do attitude and heaping helping of pluck and vim and vigor!  It's bullshit though.  I mean, some of it's true, but so are the late nights not able to sleep from anxiety, the desire to withdraw, the wish for all this to be over because the "journey" is terrifying and difficult.  All those thoughts go through my head, as well as the positive ones.  I am lucky.  I am unlucky.  I am courageous.  I am afraid.  Things are good.  Things are bad.  I'm doing well.  I'm struggling under the weight of everything.  All this is true and contradictory at the same time, and in the end I will get the full experience of the Human Condition.  I do not want it, and I am grateful for it.

Mostly though I am grateful for my friends (past and present) and the experiences good and bad that have shaped me.  And I am especially grateful for the three people above who mean more to me than anything else.  I won't go so far as to say that The Beatles were right and that All You Need Is Love, but without love so much of life would be both harder and less meaningful.  Thank you Kirsten & Maya & Dylan, I love you all very very much.

Health Update 03/28/2022

Hard to believe it's the end of March already.

I had an MRI on my brain on Wednesday March 23, and they posted the results for me on Friday the 25th.  I've read a lot of these reports over the last year or so, and this one was the shortest report I've gotten so far.  Here's the money quote:

Unremarkable examination. No evidence of malignancy. No change from prior study.

So things continue to go very well for me.  Nice and boring.  As I told my Dad, I've never been more happy to be unremarkable.

We meet with my oncologist on the 31st to go over the results ("that's the first 30 seconds"), and presumably to schedule my next set of scans, which will be of the PET/CT variety and will cover the rest of my body.  Other than that, nothing new yet.  No news is good news.

Health Update 01/14/2022

Had a PET scan on January 10.  Got the results today.

Still N.E.D.

Thanksgiving Update - 11/24/2021

 So on Tuesday Sept. 28, I had my third thoracentesis.  This procedure to drain the fluid that had built up in my pleural space went well.  They pulled approximately 1300ml of fluid, and from the x-rays taken afterwards, it appears that all the fluid has been removed.  The previous two that I had took out about the same amount of fluid each time, but each time they were unable to get all the fluid out.  Now they have.  I can breathe more fully now than I've been able to since January or February 2021.  It's a nice feeling, I must say.

 On Wednesday Nov. 17 I had an MRI on my brain to take a look & see if the metastases I had remain gone.  We met with my doctors on Tuesday Nov. 23 to go over those results.  My brain is still cancer free.  With that result, and the result I had from my PET scan from Sept. 13, I am officially No Evidence of Disease.  This is the best possible outcome for someone with Stage IV cancer, and we are extremely happy to have gotten here as quickly and (relatively) easily as we have.

There are many things to be thankful for every year, but this year the big three are Family, Friends, and Science (particularly cancer research science).  Without these three things, I would not be here today.  The love and support of Kirsten and Maya and Dylan, and also my Dad & stepmom & brothers and my Uncle and Aunt, have really helped me throughout all of this and I am forever blessed to have them all in my life.  I also want to particularly thank Tammy & Roland Ortega, and their kids Maya & Roman.  They have really gone above and beyond for me and my family over the last 6 months or so as we navigate all of this.  Thank you very much, Ortega's!

So with the fluid gone, and with the cancer currently not active/dead/not detectable, I'm hoping that this blog will get very, very boring.  Every few months, I'll have more scans.  As long as they do not find any progression, I will just continue taking a daily pill.  I'm hoping I can just post "Still N.E.D" after every set of scans for a long while.

 Happy Thanksgiving, everybody, and thank you for all the support!

How are you now? An updated FAQ

 Q: So how are you doing now?  I know you said not to ask, but really that's what I want to know, and you only post blogs every couple of months.

A: I know, I know.  At the time I wrote that original FAQ, my family and I had just been blindsided by the diagnosis, much was still uncertain and from where I stood at the time, also very bleak.  And everyone wanted to know how I was.  The answer at the time was "Bad, and I don't want to talk about it".  So how am I now?  Better.  So far the treatment (Tagrisso) is working well, clearing up the active cancer and allowing my body to heal where the cancer had done the most damage.  The side effects are still manageable, though they aren't consistent and some days are worse than others.  The main one continues to be fatigue, and not the kind of fatigue that means you sleep all the time.  Just the kind that makes doing anything physical a challenge. The other main side effect these days is a lack of appetite, which we're working on.  But again, all the side effects are easy to deal with, especially in comparison to the primary effect the cancer was having on me in April.  Anyway, all of this is to say that I don't mind being asked how I'm doing as much today as I did then.

Q: Do you have a prognosis now that the treatment you're on has been so successful?

A: Not really.  That is now the hardest part of this.  I could stay cancer free for a long time.  I could have a recurrence in a few months.  I will be in some form of treatment for the rest of my life, I believe.  Hopefully future treatments are as easy on me as the current one.

Q: Why is this blog called "Distant Cities"?

A: I had actually created this blog several years ago & posted a thing or two that I have since taken down.  I've toyed with the idea of writing, but ultimately didn't think my thoughts were worth the effort of writing down, polishing, and then publishing.  But I needed a name, and I liked the way "Distant Cities" sounded.  It's also kind of where I like my big cities to be.  Distant from me.  And if I were to form another band, that would be the name. This blog has of course been repurposed as a way for me to share updates on my health with a bunch of people spread all over the world.  And I couldn't handle naming it using the word "journey" anywhere.  I'm not really on a journey, or at least not on a journey any different from the rest of you.  It's the journey from the cradle to the grave, and we all take it.  I also am not a fan of the war metaphor that is so common in the different cancer communities.  "Warrior" "fighter" "battle" "kick cancer's ass" etc.  It seems the wrong metaphor for the patient.  I am not fighting cancer.  The doctors and everyone involved in developing treatments are fighting cancer.  I am the battleground upon which that fight happens.  Perhaps it's because of my history as an endurance athlete, but the way I think of it most of the time is very similar to an ultramarathon.  You're tired, things hurt, it's hard to eat, but you keep on going.  You endure.  My job is to show up and endure, whatever the treatment is.  For as long as I can.

Q: Interesting way of looking at it.

A: That's not a question.

Q: Yeah, but you're talking to yourself anyway, so you can frame this any way you want.

A: Yes, the Q&A format in which I control both the questions and answers allows me a great deal of freedom to talk about whatever I want.  And while there will be a healthy dose of talk of cancer and treatment and other things related to my health, I will occasionally throw in other things that are or were of interest to me.

Q: So you were in a band?

A: Yes, several.  Two of them have recordings on iTunes if you're interested. 

simple. - In Perfect Disarray 

The Mindy Set - Bizarro and the Beautiful You 

Q: Do you still play music?

A: Not really.  I mess around on the guitar sometimes, and my son plays piano so I sometimes plink out a few chords and try to play Hey Jude or Let It Be.  But I realized some time ago that I am a passionate music fan, not so much a passionate musician.  Want to buy a guitar?

Q: You ran ultramarathons?

A: Yes, a very few.  Two, in fact.  One was 50 kilometers and the other was 50 miles.  I had aspirations towards running the Western States Endurance Run but I was unable to get back to running those distances after a knee injury and subsequent surgery.

Q: That's too bad.  Do you run now?

A: I would dearly love to, and I'm hoping that after my coming thoracentesis I will be able to run again.  As it stands now, I am too short of breath for anything more than a brisk walk or a hike a little ways up the Sandias.

Q: I just have one more question....

A: Is it a good one?

Q: What is the airspeed velocity of an unladen swallow?

A: African or European?