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?

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

Health Update 07/27/2021

Well that went better than I ever could have expected.  At the time I had the scans (July 22nd), I had been taking Tagrisso for 9 weeks and 1 day.  The results have been spectacular.  The metastases (or mets) that had spread to my brain are now gone.  The primary tumor in my lung is quite significantly reduced in size, and the surrounding lung tissue now looks healthy.  The mets to my bones are smaller and are healing.  The pleural effusion that was (and is) restricting my breathing is smaller.  Really, other than getting to No Evidence of Disease (NED), this checkup could not have gone better.  Tagrisso really has been a wonder drug, and every night at 8 pm I drink my daily toast (of water, with a pill) to modern medicine. I would not have believed these types of results were possible when battling cancer from just taking a pill.  No chemo, no radiation therapy, just a pill that for me has had minimal side effects (others are not so lucky).  I get some cramping from the electrolyte imbalance it can create, which has so far been easily solveable by drinking 20-40 ounces of Gatorade daily.  I have a bit of a rash (which looks like pimples) on my nose and the top of my head.  Again, easily dealt with by careful cleaning and mostly letting them come and go.  My appetite is reduced, and food can sometimes be a chore to eat, so when I need calories I drink a chocolate shake.  I get fatigued, which has probably been the hardest thing to deal with.  I used to run 30-50 miles a week, and now a daily 2 mile walk wipes me out.  But all of that is nothing compared to untreated lung cancer, which was literally killing me 3 months ago.  I am elated with how well the treatment is going.  My family and I are so very grateful for the advances in cancer treatments, and are thankful specifically to AstraZeneca for developing Tagrisso.

So what's next?  

I'm glad you asked.  Next is we continue with Tagrisso, have another PET scan on my body in September, another MRI on my brain in November, and followups with my oncologist after each one.  This will become the rhythm of our lives for quite a while, if not forever.  Even if the cancer becomes undetectable in my body at some point in the future, cancer is the kind of disease that likes to come back, so I will get scanned a lot over the coming months and years.  And eventually, Tagrisso stops working as the cancer mutates to get around it, necessitating different treatments.  But that moment is hopefully quite a ways away, so for now we are going to Carpe Diem as a family, enjoy our time with each other, spend time with friends, and find the beauty in the world around us as best we can.  I suggest you do the same.

 

Sunset at a little pond near our house.

I am very grateful for all the support and love I've received from my friends and family over the past several months. Having you all in my corner has made coping with this much easier for me and my family.  Thank you all.

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.