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?

Health Update 09/21/2021

 So I had a PET scan on Monday Sept. 13 (coincidentally, the birthday of my favorite singer and songwriter), and I met with my oncologist on the 20th to go over the results.  And the results really are quite spectacular.  There is no sign of active cancer in my body.  My PET scan from the 13th looks clean.  There is still tissue from the tumor in my lung, but it is dead tissue.  The metastases on my bones are all gone.  Tagrisso has, for all intents and purposes, killed all the cancer in my body, within the limits of medicine's ability to detect it.  My family and I could not have asked for better results, just 4 months after starting treatment and 5 months after being diagnosed.  I don't think I'm quite at No Evidence of Disease yet, as I do still have a pleural effusion from the cancer in my lung.  I'll have a thoracentesis for this on the 28th, which should improve my breathing as I am still a little short of breath,

It should be noted that I am not considered "cured", or anything like that.  With stage IV cancer, that's not generally a term that is used.  Cancer is the kind of disease that likes to come back, so I will continue taking Tagrisso for as long as it works.  My oncologist believes that because I've had such a strong initial response, that response will last for a longer time than the median (which, depending on the statistics you find, is somewhere between 11 - 19 months).  Apparently there's a correlation between the depth of the response and the length.  However, no one can really tell us how long this great response will last.  There's a Facebook group for patients and caregivers of patients on Tagrisso that I'm a member of, and within that group are people who's cancer progressed in as little as 6 months, and there are people who have been taking Tagrisso for 3 or  4 years or more who are still N.E.D. or stable.  One person had his cancer stay stable on Tagrisso for 7 years before it progressed.  So there is a lot of room for hope, tempered by a slight bit of fear.

Moving forward, I will get my body scanned and have an MRI on my brain every 4-6 months.  If a spot of active cancer appears, my oncologist is hopeful that we can kill it with targeted radiation therapy.  And there are several new targeted therapies specifically designed for cancers that have mutated around Tagrisso that are in clinical trials at the moment.  It feels to me like we are all living in the cusp of a moment where cancer goes from being a lethal disease to a chronic illness that can be managed or eradicated.  There are so many new treatments being tested and developed, from targeted therapies to immunotherapies, new chemotherapies, better more targeted radiation therapies that attack the cancer and leave the healthy tissue alone, and even potential vaccines.  I am hopeful for the future of cancer treatments, and I do feel like I am a part of that future that's just getting started.  My experience has been so different from my mother's experience just 10-12 years ago, and my father's experience just 5 years ago, or my friend's experience 3 years ago.  I may still get to experience the joys of chemotherapy and radiation therapy at some point in the future, but for now, I continue to take a daily pill.  I am very, very lucky.

The next steps for me and my family are addressing some of the side effects of Tagrisso to hopefully increase the quality of my life, and to start to learn to live with the vast uncertainty of what the future will bring.  But really, don't we all live with that uncertainty?  All of us know we will die someday, and none of us know when.  I just have a very particular wolf at my door that, for now, is kept at bay.

Photo by Marc-Olivier Jodoin on Unsplash