Health Update January 12, 2026

 Well, these updates are coming faster than they have in a while. Things continue to be more interesting than I would like.

So I had an MRI on my brain on January 2nd, to look at the results of both the surgery and the radiation treatments I had to my pituitary gland. The good news is my brain is once again clear of any cancer.

I had an MRI on my abdomen on January 7th to see how the microwave ablation treatment I had on December 1st went. The good news is the spot they ablated remains gone, and that area of my liver looks good. The bad news, unfortunately, is that the rest of my liver has developed numerous metastatic lesions since December 1st, and by "numerous" I mean at least 20. Far too many to do any kind of local intervention like another ablation or radiation. So what that means is my current treatment regime has failed, and we need to switch to another one.

Starting on Thursday Jan 15, I will be taking amivantamab, and will continue with Tagrisso. Amivantamab is delivered either through an injection (newly FDA approved, so not widely available yet) or through an IV infusion. The initial dose on Thursday is a small dose to make sure I don't have an allergic reaction, so I'll be there for at least four hours. Assuming that goes well, I'll have the full dose on Friday the 16th, and after that I'll get an infusion or injection once a week. After about 6 weeks we will look to see how well it's working.

In the meantime, I have discontinued Tabrecta, the drug we added back in June 2024 when I had my first major progression. As Tabrecta has been my most problematic medication, I won't miss the side effects, particularly the edema. But it's always a bit sad when you have to change treatments, as it means I'm a little further along in my journey, or to use my previous metaphor, my wolf is circling a little closer. So farewell and thanks, Tabrecta, and please take your fluid retention with you as you leave.

I'm nervous to be starting a new medication, as they all have side effects that can be mild or extreme, and you never know which way it's going to go until you start. On the other hand, I'm very grateful to have another treatment option available that is not chemotherapy, as my one experience with chemo was not pleasant.

With things changing as much as they have been lately, I'll probably be making more frequent updates to this blog. 

Health Update Dec 16 2025

 It's been busy since my last update.  I had undergone surgery to remove a tumor on my pituitary gland, which went well, though left behind some cancerous bits that we then radiated. That particular radiation session has happened (in late October) and went well other than the usual fatigue that always seems to accompany any radiation treatment. After that radiation treatment, I had a PET scan on the rest of me, which I was really hoping would be clear. It was not. I had another spot of active cancer on my sacrum, and another spot on my liver. So in late November, just before Thanksgiving, I had radiation treatments to my sacrum, and then at the start of December I had microwave ablation done to the spot on my liver. For those of you that are curious, this involved a long needle with a microwave emitter on the end of it that was pushed through my abdomen and liver until the tip was at the lesion, and then the lesion was burned off. That part seemed to go fine (anesthesia was involved, so I have no memories of the procedure), though we won't know for sure until January when we look at my head and abdomen again, after the affected areas have had a chance to heal up. The real drag to the ablation procedure was managing my adrenal insufficiency, which is a result of the pituitary tumor and is still affecting me. My body does not make sufficient quantities of cortisol, so I have to take daily doses of hydrocortisone to replace what is missing. Then, whenever I undergo any kind of stress (illness, strenuous exercise, procedures), I have to increase the dose of my hydrocortisone, since my body does not yet make its own cortisol, and may never do so again. We did that after the ablation procedure, but it wasn't high enough or long enough, so I had a period of feeling sick again, though not quite as sick as I was prior to the surgery to remove the tumor from my pituitary. I'm on a higher dose now, and feeling much better, though still tired. So that's the latest news here, with more to come in January. Still here, still beating the odds, but with my wolf maybe circling a little closer.

On a cute and positive note, Kirsten fosters through Animal Humane NM, and right now we have a group of adorable puppies with their mama that will be ready for adoption very very soon. Here's a couple pics of Mama:

 

And here's some of the puppies:

 

Health Update September 22, 2025

 The eventful times continue.  Here's what's been happening with me since my last update.

 I had an MRI in July that showed a small tumor on my pituitary gland.  At the time it was about 9 mm in diameter.  That finding explained the symptoms I had been experiencing before that, which were eventually diagnosed as hyponatremia (low sodium), hypothyroidism (low thyroid hormone), and adrenal insufficiency (low cortisol).  These three together combined for some miserable months for me where I was weak and nauseated, and barely able to function.  At my worst I was basically unable to walk more than 100 feet without being exhausted.  Getting on the right meds has helped tremendously, and on September 17 I had transsphenoidal surgery to remove as much of the tumor as possible.  In between July and the surgery, it had grown to about 12 mm, so getting it out quick was good.  Unfortunately, a small piece was attached to my carotid artery, so I will also be having radiation therapy (yet to be scheduled) on that area.  Preliminary biopsy shows it is malignant, so my doctors, my family, and I are all glad we moved quickly to get it taken out.  Recovering from that surgery has gone better than I expected, and despite having a small hole drilled into my skull 5 days ago I am only on ibuprofen and acetaminophen for pain control.  I'm more mobile than I was two to three weeks prior, and generally I am feeling much better, other than my sinuses being very stuffy and still healing.   This little section of fun isn't over yet, as I have follow ups with my surgeon and my oncologist for next steps and deciding if we need to make any treatment changes other than the radiation I know is coming.  I suspect PET/CT scans and MRIs will be in my immediate future as well.

 Here's Kirsten and I out for a little walk on the 21st, just 4 days after my surgery.

On a little different note, I want to take a moment to thank all the caretakers in the world, who have a very tough job caring for the sick people they love while also trying to take care of themselves, all while grieving the decline and the (eventual) end of their caretaking responsibilities.  It is not easy, in fact I think I can safely say it is very stressful and demanding, with patients who are feeling terrible, can be demanding and very cranky, and who despite their best intentions may not be able to adequately express their gratitude.  Being sick and weak and in pain puts us in vulnerable positions that we don't want to be in, and makes the smallest things seem insurmountably difficult sometimes.

So I would like to personally thank profusely Kirsten, who bears the brunt of my caretaking during my bad periods and recovery from various treatments.  She has been so wonderful through what has been the most stressful thing either of us has ever gone through, and I love her wholly and completely.  Dylan, my son, has also been of great help.  My daughter Maya is living on her own, trying to establish her adult life, but has been a great help as well when she is here.

I would also like to thank my father, Lloyd, who took care of my mother Nancy while she was going through her breast cancer treatments before she passed back in 2012, and my aunt Sharon who took care of my uncle Bruce during his own fight with lung cancer before he passed in 2023.  What they did was not easy, and I appreciate everything they did for two people who meant a great deal to me before they passed.  I would also like to thank my step mother Beth, who took care of my Dad during his own battle with head and neck cancer 6 or so years ago, and now with his (thankfully) stage 1 lung cancer.  My dad is fortunately still around, and having his own live in nurse (Beth was a nurse in her professional life) has been enormously helpful for him.

 So if you know someone who is a caretaker, please take the time to check in with them to see how they are doing, and to see if they need help or are struggling under what can be a very heavy burden.

  

Thank you caretakers.

Health Update May 16, 2025

 It's been a somewhat eventful few months for me, so here's the breakdown:

Had radiation to my T10 vertebra in February of this year.

April 27, 2025 marked 4 years since I was officially diagnosed with cancer.  Strange thing to celebrate I suppose, but still being here after 4 years of Stage IV lung cancer feels pretty remarkable.

Had a scan May 8.  It shows a couple of spots, one of which is unambiguously cancer, so we will be radiating that spot in the next few weeks.  I have a planning session on May 21st, after which we will schedule the radiation treatments.  The second spot is more ambiguous, so we are in the "watch and wait" stage.  We will do another scan in about 6 weeks to see if it goes away (if so, it wasn't cancer), stays the same size, or grows.  In the latter two cases, that would mean it is cancer, and we'll come up with a treatment plan for it at that time.

Overall, my health is OK.  The side effects from Tagrisso + Tabrecta are more than Tagrisso alone, and I definitely am feeling those effects.  Less energy, more issues with eating and nausea, frequent headaches.  But nothing compared to the round of chemo I endured last May.  So overall I am doing alright, and looking forward to celebrating a few milestones with my family in the coming year.

Health Update January 30, 2025

 Another short update.  So as I mentioned in my last blog, Spring & Summer 2024 were rough.  But in June I started on a new medication and that new medication (Tabrecta) in combination with Tagrisso is working to keep everything under control again.  I did have a spot growing on my L5 vertebra that we hit with radiation, and that spot is now gone.  However, I have another spot, this one on my T10 vertebra, so I will do some more radiation to take care of it.  Otherwise I am clean and doing fairly well.  Some side effects but nothing like chemo would bring.  So I will do the radiation and then we'll scan again in about 3 months time.

Health update September 26, 2024

I haven't posted here in a while, and that's likely to be the case going forward.  So any posts I make from here on out will be short and informational.

I went through a rough patch between about February and June.  However, starting in June (and after a bit of a fight with the insurance company) I started on a new medication in addition to Tagrisso called Tabrecta.  Within a couple weeks of starting the additional medication, I felt significantly better.  I was able to get off the painkillers I was taking daily, and even better, the fluid that has been a constant presence in my right lung started drying up.  So as of now, I am doing well other than some edema in my hands, arms, feet and lower legs.  I get to wear compression socks and on my left arm a compression sleeve as well.  Both the medications can cause fatigue, and both of them together are definitely causing me to be tired by the end of every day.  In the mornings though, I am able to take my dog Daisy for a walk, usually between a mile and a mile and a half long.  This is something I was not able to do 6 months ago.

So for now things are going well again.

Health update December 22, 2023

 Been a little while since I posted one of these.

So, I had a scan on December 20, and got the results of the scan on the 21st.  The good news is that there is no sign of active cancer.  I do have a few things that are sort of secondary to the cancer that I'm dealing with, but everything seems easy to handle when the doctor tells you there's no sign of cancer.

I'll probably have a procedure or two over the coming months to deal with the perpetual fluid buildup in my right pleural space, and I need to start some physical therapy to deal with some of the injuries and insults my spine has taken over the last two and a half years, but overall my family and I have been given the best Christmas gift of all, more time!

So Happy Holidays to everyone!

Health update 07/08/2023

 This will be a short update.  I had an MRI the beginning of June, and a PET scan the end of June.  Both of them show that I am clean of active cancer.  So I will be staying on Tagrisso for at least another 3 months, when we'll do the scan dance all over again.  So, good news & I continue on!

A 2nd Anniversary

 Well now, on April 27, 2023 it will have been 2 years since I was officially diagnosed with Stage IV lung cancer.  I wasn't all that up for celebrating a year ago on the 1st anniversary of my diagnosis, but this time I'm a little more celebratory.  Or at least, happy to have another year gone as I live with this lovely disease.  As you may recall, initially I wasn't sure I would make it a year.  So to make it two years still in relatively good health and still taking Tagrisso as my main treatment feels pretty good.  There have been ups and downs, good days and bad days, hell good weeks and bad weeks, but overall I'm still doing pretty well.  The treatment is not without its downsides, but its still significantly more tolerable than most chemo regimes are.

So here's hoping I get many more years out of my current treatment regime!

Health Update September 8, 2022

 It'll be a short post this time.  Because the PET scan I had on Friday September 2nd shows that I remain free of any active cancer.  Still N.E.D. as they call it (no evidence of disease).  What else is there to say at this point?  Nothing, that's what.  My family and I are very happy with how things have gone.  

So since this post is so boring, here is some new music from my favorite artist to hold your attention for the next 6 minutes or so.

The Church - The Hypnogogue

Until next time! (that would be in December when they scan me all over again)

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?

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.