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Turned Upside Down

Jonathan Clements

FOUR MONTHS AGO, I was told I might have just a year to live. It’s been a whirlwind ever since.

I’ve been inundated with messages from acquaintances and readers, gone to countless medical appointments, my diagnosis has received a surprising amount of media attention, I’ve been hustling to organize my financial affairs, and Elaine and I have taken two trips.

Where do things stand today? Here’s what’s been going on.

Medical update. After three radiation treatments to zap the 10 cancerous lesions on my brain and an intense opening round of infusion sessions, I’ve now settled into an every-three-week chemotherapy and immunotherapy program.

I typically feel a little rough for the four or five days after each chemo session, and then things improve. There’s a fairly predictable series of side-effects, including insomnia, nausea, constipation, acne, cracking of the skin on my fingertips, hair thinning, mouth sores and feet swelling. I find the side-effects are eased by exercising every day and downing countless glasses of water, though—thanks to all that water—it also means I regularly feel like a four-year-old who suddenly screams, “I got to go.”

Is the treatment working? So far, so good. Two months ago, a brain MRI and abdomen scan showed the cancer has, for now, stopped spreading. I’m slated for another abdomen scan on Monday, and another brain MRI in early November. This happy state of affairs will eventually end, and I’ll need another treatment plan if I’m to keep my cancer at bay. Still, it seems I’ll get more than the year that was initially predicted.

Health insurance. In late May, over a 14-hour stretch starting Sunday lunchtime, I went from a local hospital system’s urgent care clinic to its emergency room to the intensive care unit. What was all this costing? Would my insurance cover it? I believe we should all strive to be smart consumers of medical services. But the truth is, these are not questions I could have got answered at the time, even if I’d thought to ask them.

Indeed, when I did start asking about insurance coverage, nobody seemed to know. Instead, I fell back on the assumption that my costs would likely be capped by my policy’s $5,800 annual out-of-pocket maximum. But I wasn’t 100% sure.

What if my hospitalization, along with the various tests and procedures, needed insurance pre-approval? What if one of the doctors who treated me was out of network? As it happens, all has been fine.

Still, I look at the insurance company’s explanations of benefits (EOB) and shake my head. For instance, there’s the 26-page EOB statement from June 12 for a $80,513.60 hospital bill. My health insurer deemed $15,024.65 to be allowable, with $2,552.63 owed by me and $12,472.02 paid by the insurer. Was I charged the right amount? Count me among the clueless.

Clearing out. I’ve been slowly working through a handful of boxes housing old tax returns, letters, financial statements, photos, mementos and more.

Along the way, I’ve tossed a bunch of letters from when I was in college. Glancing through those letters, I’m not sure I would have liked my 19-year-old self. I come across as self-absorbed and pretentious, and I’m glad my kids will no longer get the chance to see that side of my younger self. Want to present a carefully curated version of who you were to future generations? Maybe it’s time to clean out the basement.

In sorting through all this stuff, I have two guiding assumptions. First, if I leave behind too many personal papers, there’s a risk my family will give them a quick glance and then trash the lot. This is a case where less is more.

Second, if I don’t throw out unneeded financial documents, my family will assume they’re important. Ditto for personal possessions. If I don’t toss the stuff I don’t care about, there’s a risk my family will imagine these items had some value to me, sentimental or otherwise. Again, less is most definitely more.

As I plow through the boxes, I’ve been making snap decisions, but I doubt I’m being too hasty. Between 2011 and 2020, I moved four times. Each time, I shed a fair number of possessions. The good news: There’s nothing I’ve regretted throwing out, and I’m confident that’ll also be true this time around.

Tripping. Last year, before my diagnosis, Elaine and I started compiling a travel wish list—the Shetland Islands, an Alaska cruise, the Amalfi Coast, the Galapagos Islands, that sort of thing. All this daydreaming went out the window with my diagnosis.

What trips could we realistically take in the time I have remaining—trips that, ideally, wouldn’t be too taxing and, if necessary, could be cancelled at short notice? Before my diagnosis, we had three vacations booked. But none fit with my chemo schedule, plus I was concerned not to spend more than a week at a time away from home and hence away from my doctors.

The upshot: So far, Elaine and I have taken a weeklong trip to Ireland that had previously been scheduled for 12 days, and had a long weekend away with my two children and their families. We’re about to fly to Paris. We’ve also changed the dates for a previously scheduled London trip, swapped from an 11-day Caribbean cruise to a shorter one, and started making arrangements for a second trip to Ireland. There are more trips I’d like to take, including visiting my beloved Hope Cove, but that hinges on my health.

Two minds. When I first heard my diagnosis, I quickly made peace with my fate. It may not have been what I wanted, but it came with certainty—and we humans like certainty.

Today, I find myself more torn. On the one hand, I know the next brain MRI, or body scan, or blood test may show I’m starting to lose my battle with cancer. On the other hand, there’s a good chance I’ll be healthy enough to travel through at least late spring 2025, and I’m excited about the trips we’re planning. That excitement is putting a dent in my stoicism. Should I accept the finality of my diagnosis or allow myself to dream about a future that likely won’t happen? I find I’m struggling to do both.

Jonathan Clements is the founder and editor of HumbleDollar. Follow him on X @ClementsMoney and on Facebook, and check out his earlier articles.

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Mark DDW
29 days ago

As perhaps the only commenter here who actually knew you in your college days, I must disagree with your characterisation of 19 year-old Jonathan. I recall a kind, hardworking young man who did overnighters at Stop Press (as Varsity was called back then) & powered through to attend lectures the following day. We were all finding out who we were – & a touch of self-absorption was just part of that exploration. I look back on my teenage self with a degree of awe – a young bundle of abilities, insecurities & aspirations somehow made it to the world’s best university (the University of Cambridge, in case American readers are wondering) & then went on to build a happy & successful life. Which is what you did too!

Last edited 29 days ago by Mark DDW
Mark DDW
28 days ago
Reply to  Mark DDW

Just proves I got the hardworking bit right! 😁

Jonathan Clements
Admin
29 days ago
Reply to  Mark DDW

Mark: Thanks for the kind words, but your memory is a little faulty. Yes, there was staying up all night every Thursday to get the weekly student newspaper ready to go, so it could be published on the presses of the Cambridge Evening News at 8 a.m. or so Friday morning. But my attendance at lectures grew increasingly spotty as time went on. In fact, in our penultimate term, I managed to attend a total of just four lectures, which is why I spent the five-week vacation that followed in college, studying like crazy for final exams. It was, incidentally, a wonderful five weeks, camped out in my rooms and enjoying the peacefulness of a beautiful-but-empty Cambridge college.

Mark DDW
28 days ago

Just proves I got the hardworking bit right!😁

Tony Schmitt
30 days ago

Jonathan – You are giving us much to consider. Thank you for sharing and taking us on your journey. I pray for you and your family and look forward to the next excerpt. All the best my friend.

Susan Ann Tipton
30 days ago

If you ever doubt the hospital’s bill, ask them to audit your account. I had one that I worked very hard to reconcile between the hospital and my insurance. I paid what the insurance said I owed. I received a threatening note from the hospital who was turning me into a collection agency. I redid my figures, could not find the error, and asked them to show me where I went wrong. Next thing I know they had audited by account which resulted in them sending me a check for a few thousand dollars of over payment. A friend in the hospital billing department says it is not uncommon for them to make mistakes.

Brent Wilson
30 days ago

I understand both the appeal of stoicism as well as the struggle of adhering to it. Still, I hope you are able to restrain your thoughts about the future and enjoy the present moment without reservation.

Nick Politakis
30 days ago

Jonathan, thank you for the update and I wish you and your family the best.

Andrew Forsythe
30 days ago

Jonathan,

Thank you for the medical update. I’m so glad for the positive elements in it though the chemo side-effects sound pretty tough. I hope you’ll keep us apprised on this front as we’re all pulling hard for you.

On the decumulation process, I admire your “ruthless” approach and may adopt it when I finally get serious about this. You’re quite right that our kids aren’t going to want the vast majority of this stuff. My parents were both gone by 2003, and I still have boxes of their stuff I need to further cull.

SanLouisKid
30 days ago

You were missed at the Bogleheads conference last weekend in Minneapolis, but you were present in thoughts and comments by the attendees.

I have 95% of my paper scanned. Documents, letters, pictures, etc. All my movies are digitized (from DVDs) and all my music is now digital. I jokingly say the executor of my estate just has to hit the “delete” key on my computer and that part of the estate will be taken care of.

One observation: The less you leave, the more important it will be in the future. I have one handwritten letter (now scanned) from my grandfather that has become an important part of family legacy that I will pass on.

Stacey Miller
30 days ago

Seeing your travel plans made my heart sing! We’re aiming for Ireland in the spring for my 60th! Perhaps our paths will cross at a pub!

Currently we’re in Italy, spurring on their economy, & looking at the fashion choices I have not and will not make. 😀

Be well and get that next trip on the books!

Chi Jang Yin
30 days ago

Thank you for your gift and sharing. I have been a reader of your posts for the past three years. Your writing has significantly shaped my understanding of financial advice, and I often share your posts with family and close friends. In a world where genuine writing about financial advice is hard to find, your work stands out. Learning about your diagnosis, I felt sad. And still, these days, your writing remind us about be grateful in living. Your writing this week regarding ‘curating’ oneself’s life to a better version of the self resonate with me. I deeply admire your courage and wish that one day, when I know my own ‘certainty’ of what comes next, I want to be reminded of your graciousness and be grateful. 

Celeste Jones
30 days ago

“Should I accept the finality of my diagnosis or allow myself to dream about a future that likely won’t happen?”

That is the BIG cancer question! When my DH was diagnosed with a very aggressive SCLC lung cancer he read all the stats and info and pretty much concluded he had about a year if he was lucky. And he went through the maximum Chemo and radiation treatments like a champ with all the expected side effects. He began seriously tutoring me in all aspects of financial investing and planning and future money management and even began house hunting to get me resettled in a place closer to my extended family. He pretty much planned to be dead in two years. After each recommended CT and MRI scan (at 3, then 4, then 6 month intervals) he would plan a trip (Italy, Japan, Spain, France, SE Asia, Iceland, and a number of cruises) which we would take within a month of the scan. He loved travel after retiring and was a terrific planner. He didn’t allow himself to believe in a future of more than a few months in spite of all those NED scans. Now, at 5 1/2 years post treatment he might have to let himself dream. I hope you experience the same!

jimbow13
29 days ago
Reply to  Celeste Jones

NED’S a great guy!

Mark Bergman
29 days ago
Reply to  Celeste Jones

I doubt many besides me (a retired Oncologist) know what SCLC (Small Cell Lung Cancer) and NED mean – No Evidence of Disease 😜

Marjorie Kondrack
30 days ago

Jonathan, my treatment cycle was similar to yours. I started out on a three week cycle and as I begin to have good results, I advanced to four weeks, for three years all told..
I can Relate to your side effects and can add pericarditis (heart condition) And the need for blood transfusions. I have also lost and recovered my hair twice.

I only expected two years but after six years, I am still here, although like you, the scans and MRIs hang over me like the sword of Damocles.
In your favor, You are relatively young and as you mentioned in the past, in decent shape. I have high hopes you will live a lot longer than you expect.

We eagerly await your updates, Jonathan. I’m so glad the treatments have stabilized the cancer thus far. You have helped raise the standards for humanity, care, and dignity.

Jonathan Clements
Admin
30 days ago

Thanks for the kind words, Marjorie. Sword of Damocles — I, too, use that phrase to describe the regular testing that could change my life’s trajectory for the worse.

Dave Melick
30 days ago

Keep fighting the fight, Jonathan!

smr1082
30 days ago

Jonathan,

You are doing everything right, the best you can.

We all have limited time on this earth and nothing is certain. My guiding principle for navigating my own uncertain future: ” Life, if lived well, is long enough”.

Last edited 30 days ago by smr1082
booch221
30 days ago

Jonathan,
Will you be able to switch your health insurance policy to an ACA Platinum plan or something more comprehensive during the next open enrollment?

Last edited 30 days ago by booch221
Jonathan Clements
Admin
30 days ago
Reply to  booch221

I know I’ll hit the out-of-pocket maximum next year, so that’s the number I’m focused on, not the deductibles or copays. A cheap bronze plan with a low out-of-pocket max and my current doctors in network would probably be the wisest choice.

Mike Gaynes
29 days ago

Jonathan, having doctors you trust is priceless, but it’s also pretty wonderful having an insurance company you trust. I remember when I opened the bill after my first immunotherapy treatments. I saw $104,000 and freaked out. A quick 1 AM call to my insurance company yielded soothing reassurance from an overnight financial counselor. My share of that bill turned out to be $4000. And over the full four years of my illness, surgery and treatment, they covered somewhere close to $3 million.

mcgorski
30 days ago

Jonathan, a backyard bonfire of old docs is a good opportunity to get everyone together and enjoy some company.

Your observations from when you were 19 are funny. I don’t regret opportunities I didn’t pursue or investments that went sideways, but I definitely went through a period of regret for those times I wasn’t kind or was a know it all.

Forgive yourself. As we are all a work in progress, I suspect we all go through that to some degree. In some respects, it can be a good thing to share with our kids we haven’t been perfect.

Jonathan Clements
Admin
30 days ago
Reply to  mcgorski

Fear not: My kids already know I’m imperfect!

Martin McCue
30 days ago

Every new day on earth is a gift, no matter how many or how few you have left. Don’t angst over it. So many people around you love you and just want you to be happy (and feel no pain). If you are undecided about what to do next, just use the moment to think about and appreciate what you have now.

I was intrigued by the “clearing out” section of this missive. I have boxes and boxes of well sorted but unculled papers, photos and other documents in my basement. Will my kids care about what I earned as a teenager, or how my 1040s changed over the years? Are there stories buried in those boxes that even I have forgotten about? Is there a photograph that was meaningless when I took it, but that is memorable today? And, as you note, how many things in those boxes would I want my kids to NOT see! I’d sure appreciate more of your take on how you approached that process.

David Lancaster
30 days ago
Reply to  Martin McCue

I have kept mine, and my wife’s 1981 1040 for the year before we were married. I made18k as a Physical Therapist and my wife11k as a Physical Therapist Assistant. I’m keeping them for my children to show them about the good ol’ days.

Jonathan Clements
Admin
30 days ago
Reply to  Martin McCue

What was my process? To be absolutely ruthless. Most of the stuff I’d kept held scant interest for me, so I can’t imagine it would hold much interest for my two kids. Both have demanding jobs, so my inclination is not to burden them further. I probably trashed 99% of what I’d been carting around for decades. I’d encourage readers to be equally ruthless.

mytimetotravel
30 days ago

I’m glad to read that the treatment is helping, and that you are getting in some travel.

I have been going through some of the paper that survived my move to a retirement community. It includes letters I only read when I consider throwing things out. Maybe it’s time…

Good that you have adequate medical insurance, at least the ACA is there if you run into problems with now having a pre-existing condition. Your experience does point up the idiocy of the current US system. How can you be an “informed consumer” when you are in an emergency room? And how could a hospital give you a quote when the final bill will be a compendium of maybe hundreds of discrete items? It’s infuriating to think of how much bureaucracy lies behind that bill, all of which inflates medical costs. The bill will in any case not be paid in full, at least by those with insurance.

Michael l Berard
30 days ago

Thanks so much for all of your advice , over the years, and I will continue to pray and hope for the best for you. You have helped me, to no end, and I am extremely grateful.

Dan Smith
30 days ago

Jonathan, thanks for the update, you have turned your misfortune into an inspiring tutorial for your friends/readers.
Regarding those EOBs, when Health Savings Accounts became available, they were going to make us all smarter consumers of Healthcare services. Sadly, even for simple procedures, the system remains complex and opaque.
And about those old and now discarded letters that painted a picture of yourself that you didn’t want your loved ones to see. I now feel better about destroying an evaluation of my scholastic skills done in between my 8th grade and freshman year of high school. It painted a picture of student solidly stuck in the bottom quartile of his peers. Terrible math and reading skills along with the lowest possible scores for writing and sentence structure. I still don’t actually know the difference between a pronoun and a participial, but I try my best to write more gooder. 

SCao
30 days ago

Hi Jonathan. Glad to hear the condition is stable. Water is great!

David Lancaster
30 days ago

1+ year. That’s a good start. Let’s hope the doctors continue to add to the kitty.

Best of luck!

Linda Grady
30 days ago

Even though you’re approaching your tasks in a compressed time frame, Jonathan, all the things you are doing need to be done by everyone who considers themselves to be seniors. I’ve been working on many of the same things. Like you, I found that moving several times (five times 2010-2019) helped a lot to get rid of stuff, especially all those heavy books that had been carted around for decades – I never lived more than 11 years in the same place. Thanks so much for the update.

Winston Smith
30 days ago
Reply to  Linda Grady

Linda,

Having downsized last year I’ll admit to being a bit envious of your constant culling of your stuff.

On the other hand, we were able to live in our ‘forever’ home for over 4 decades. I can’t do stairs any more so it was time.

The process of going through all the junk … uh … treasures ;-} … we accumulated was difficult. Especially so since our kids wanted so little of all that … important … stuff.

David Grondin
30 days ago

I am so grateful for all you’ve done. The fabulous finance books and more. Most of all thank you for sharing your current experience. Even though we have not personally met you feel very much like a dear friend.

Lucretia Ryan
30 days ago

I admire your attitude. It is maddening to try to figure out medical bills. I think you’re not yet eligible for Medicare but this is a reminder why signing up for original Medicare and a supplement G plan is so critical. Open enrollment for Medicare starts Oct 5. People enrolled in Medicare advantage may or may not be able to switch to original Medicare with a g supplement but now is the time of year to look into it.

David Lancaster
30 days ago
Reply to  Lucretia Ryan

I agree with signing up for plan G if you can swing the premiums. Luckily I convinced my sister to do this for my brother when he qualified for permanent disability. I convinced her that it was better to pay the higher premiums rather than to be paying a fee at each doctor’s visit, copays, and the deductible.

We have done the same. We can afford the premiums, and the last thing I want to deal with is the stress and anxiety of trying to figure out if we were charged correctly when the inevitable time comes when one of us is sick. I’d rather be relieved of that stress and be able to focus on just getting better.

Last edited 30 days ago by David Lancaster
David Lancaster
30 days ago

Addendum to my above comment:

I just now opened my part D 2025 Annual Notice of Change, and the premium has increased 400% from $9.90/month to $44.90, and the deductible for tier2-5 medication more than doubled from $280 to $590. I knew that we as relatively healthy recipients with only tier one medications would pay a heavy price to subsidize others who will benefit from the $2,000 maximum out of pocket, but this is ridiculous. Don’t know if changing plans will make much difference, but you I’m surely going to investigate.

Last edited 30 days ago by David Lancaster
Eileen OHara
30 days ago

It will definitely be a season of changing Part D plans from what had been pretty steady monthly premiums. To add to the complexity, specialty Tier 5 drugs may not be covered at all by a range of plans, or only covered for generic versions. The $2000 cap is in effect for ‘covered’ drugs.
In my area two zero premium plans will be offered by Well Care, but the devil is in the details for particular drug costs for each individual. I understand that WellCare has dropped broker commissions so many brokers may not be promoting that Part D plan either.
Checking the Plan Finder on medicare.gov is especially critical to fully understand total costs of drugs for 2025.

David Lancaster
29 days ago
Reply to  Eileen OHara

Not to mention pharmacy benefit managers. I was prescribed a steroid inhaler and the only one covered was one that had a $200 “copay”. This is so the insurance company gets a bigger bribe…er rebate. Knowing that a steroid inhaler is essentially a steroid inhaler I went to Mark Cuban’s Cost Plus pharmacy and obtained a different one for $50 without insurance.

Its a total racket!

moonwalkerdaughter
30 days ago

I am a recent subscriber to your newsletter. Intermittently read your various writings over the years. Your approach to your diagnosis, treatment journey, practical preparation for death, and strengthening of personal relationships is loving and inspirational. You are not wasting your opportunity to say good-bye to the people you love and they will be thankful for your time together. Peace to you, your family and friends

John Vavrousek
30 days ago

Thank you for the update.. my brother n law has out lived his prognosis by a few years now.. not easy but decent quality of life. Keep going you are on a good path it seems so far.

luvtoride44afe9eb1e
30 days ago

Jonathan, thanks for the detailed and fairly upbeat status of your health journey and your affairs. I wish you the best with the medical treatments, tests and dealing with insurance matters. I wish that payment and insurance concerns wasn’t an added stress point of taking care of your health.

Bravo on the travel accomplishments and pivoting to fit in what works. I’m glad to hear you are feeling well enough to continue traveling and booking trips!

I’m impressed by your pragmatic approach to “decumulating” your life momentos and papers. I’ve started doing the same for different reasons but with the same objective of not burdening my family with needing to do it “later”. It does feel good and gives me a sense of accomplishment (as well as the house lifting up a bit…LOL).

Continued improvement and positive outcomes for your medical tests and treatments. 👍😍

Bill Yount
30 days ago

Your “I gotta go” humorous transparency is inspiring. We missed you at Bogleheads!

tman9999
30 days ago

Thank you, Jonathan, for sharing this journey so candidly with us. You are an inspiration to my wife and me and I’m sure many others. We keep you in our thoughts and we continue to root for you beating the doc’s predictions. It certainly does happen, and your attitude and all the support coming from so many different places seems like a good recipe to help you do just that.

Go well.

mytimetotravel
30 days ago
Reply to  tman9999

The flip side of suggesting that a good attitude and plenty of friends will help someone “beat” cancer is that it suggests that someone who succumbs to the disease was insufficiently cheerful and lacked friends. Is that really what you want to convey?

tman9999
25 days ago
Reply to  mytimetotravel

Not suggesting beating cancer, but beating the docs predictions of how much longer one might live. And yes, I do believe that it is absolutely the case.

June Elizabeth Dosik
30 days ago
Reply to  tman9999

Good morning my darling,
I just packed up a large envelope of “stuff”
from the past which I shall send to you seeing that you are in the mood! Much love, your old Mum

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