Don’t forget to refresh this page in case your browser is caching the page and there are updates.

Sunday December 9: The Slog

So getting real for a moment, chemo is not super fun, nor is having pulmonary embolism, not to mention, say, cancer. They all add up to cumulative worry, random pains, tiredness, wacky schedule full of doctor’s appointment and worse, medications, reminders to exercise, eat at certain times, needing to inject myself (did I mention it was twice daily?), and other random strange things happening in the body that you chalk up to one of the above, TBD, or not ever determined because something else comes along to think about. There you have it, the slog I’m (we’re) in now, halfway through at least the first round of chemo. The pattern, the weekly rhythm, is established and there’s a bad week and a better week (one hopes). Seven more weeks or so of this. It feels like walking on a snowy, un-shoveled and hard to navigate sidewalk, for a long time.

There is also, of course, or maybe not of course but still, the Zen bright side and genuine happiness from all angles: visits with family and friends, endless offers of support from, say, 50 people, and of course my beautiful, excellent and immensely supportive wife, who lives with me and knows so well how to take care of me. Plus it’s still an experience (horrific at times but at least interesting), it’s still life, and I can enjoy a bagel brunch, a sunny day, reading, laughing, a nice hot shower, being able to walk and drive and be a sort of normal human, with the best of ‘em. So even in the slog there are bright moments and in general my positivity is at 4 out of 5.

Tomorrow is chemo round 4 of 6 (early, they want us there well before 9 if you can imagine the rudeness) and the slog will continue with a likely sinking into the low-energy, glazed eyes territory for a few days next week. Hoping to come back as usual during the weekend.

Thursday November 29: Long Time No See, Part 2

Well, not the best week last week. That “not feeling so good” last week was probably a symptom I didn’t yet understand. Spent 2 days in the ICU following an episode of blood clots Monday that culminated in pulmonary embolism. Fortunately the 3 clots weren’t large enough to do what the ICU doc called a “crazy” procedure to “bust the clots”.

I couldn’t do the usual Thanksgiving, instead resting at home on doctors orders. On the plus side, had a surprise visit from the boy and nice visits from lovely family.

I’m now on blood thinners (twice a day self-injections, not super fun) and feeling better than last week for sure. Though the chemo round I had Monday is making me very tired now (this is the typical bottom out day), and I’m sure the embolism doesn’t help anything. Slept almost 13 hours today.

I’ll update more later.

Wednesday November 14: Long Time No See

Hey there. I’m doing fine. Sorry I haven’t updated this in a while.

I decided to back off a bit on the blog posts, but will update with any milestones, chemo schedule, how I’m feeling, etc.

Speaking of which… I feel pretty good. Chemo round 2 was indeed rougher than round 1, and I can foresee that trend continuing, but oh well, the feeling that chemo’s not so bad after all couldn’t really have lasted. By “rougher” I mostly mean that I got more tired, the rebound took longer, and I’m pretty sure I’m not going to rebound as high this time, since I haven’t yet and it’s day 10. The good news is that I still have 12 days left before the next round on 11/26 to see what I can do.

Tuesday November 6: Election Day Special

No real comments on Election Day here. I’d bet everyone knows it’s time to vote.

Note flannel shirt theme in the above pics. Pretty sure I stole that shirt I’m wearing in the chair from OM’s closet this year. Experiencing peace in round 2, and a favorite flannel and ice cream moment with my pal E.

Day 2 of round two has been fine so far. Actually napped this afternoon, which means I’m feeling it, but no other side effects so far (other than cold hypersensitivity, which is kind of a given at this point).

Learned at the hospital yestrday that all my blood work looks good. The key numbers are down from pre-chemo but that’s entirely expected, and in fact they’re “almost” normal. Saw Dr. Leslie, who was very reassuring about everything being on track. Scheduled two more chemo rounds on 11/26 (getting Thanksgiving week off as a break as advertised but not guaranteed) and 12/10. Turns out the chemo effects will “keep working” even as long as three weeks.

An oddity about my condition is that I have “normal tumor markers” in the blood. This turns out to be mixed news; it’s good prognostically (probably) but makes evaluating progress harder, since that would be the normal way they'd assess how well the chemo is working. It’s also possibly why blood tests my doctor ordered earlier this year attempting to find the cause of the abdominal pain came back normal. The default assessment plan, at least from the chemo doc’s perspective, is to repeat a CT scan (I had a second baseline before starting chemo) and compare the size of the primary (appendix) tumor they can spot on the CT from the beginning to the end of the 6 chemo rounds. There may be a need for a super fun “diagnostic laparoscopy” where they open me up and take a look visually. Oh well, I’ll take it if it will help. We’ll see whether they think that’s needed.

I tried to avoid confusing E by using initials and not full names (I’m not sure why but I’m sticking to it), so E, if you’re confused, let me know and I can explain.

Sunday November 4: The Club No One Wants to Join

Thank you HH!

We got a beautiful bouquet (on top of a beautiful card) from long-time pal HH. Flowers are excellent to have around the house, it turns out.

The Zen master thing, I think, was possibly formed, reinforced at least, during my last major medical incident: the bike crash in 2002. I had returned to work three months after the crash, the 11-day hospital stay, the prolonged recovery period. One of the early days walking back from work I spontaneously burst into tears of joy on the sidewalk because I was so grateful to be able to walk normally. I told myself then that I should hold onto that feeling forever because if I could, if every simple act (like walking) brought me such joy, the rest of my life would be amazing. This is the value of the club. No one wants to join it but once you’re in it, you get a kind of shortcut to understanding what’s actually important (cf. “what draws your soul aloft”).

We inevitably forget these things over time and re-learn them as the need arises. I feel my acceptance of (not to say passivity about) my condition, and being able to be happy most of every day even while this horrible thing is happening, is some sort of gift from someone, one that I'm very happy to have.

It could be that I'm just practicing an intense form of denial or compartmentalization, but I feel that I'm fully aware of what's happening, and all of the potential downsides of my condition. So as usual I'll take the positive spin and move on, one foot in front of the other.

On more mundane topics, happy today because the "Steri Strips" covering my port have now fallen off, which is nice because they could cause (minor but annoying) pain if I twisted the wrong way. I'd post a picture of my torso but I don't want to spoil anyone's appetite. This whole week, especially the latter parts, has been one of relief. I get chemo round 2 tomorrow, and it will almost certainly be worse than the last round (which will be true every time since chemo side effects are cumulative). Next week will be lower for me, then I'd hope to start feeling better by the weekend sometime. So maybe the Zen master approach will get a few dents and I won't always be happy. To be expected in any case.

This week… nice dinner (brought to our house) and movie night with D & S Monday; dinner Tuesday with our favorite Chicago Crowell nephew; Wednesday was Halloween at the Z's; Thursday a great coffee with my long-time work friend, then homestyle Italian dinner with JJG. On Friday we voted early, I had a nice lunch with JH, and then Megan and I laid low for dinner, not realizing how much I rein in scheduling get-togethers I had given my giddiness at feeling good. This kind of non-stop socializing is great on one hand, but won't be likely to be repeated, only because it takes energy, which is my most precious commodity at this point.

By the way, I’m not sure how up I'll be for updating this until maybe Friday or the weekend, as you've probably pieced together.

Finally, Megan's "Defying Gravity" show and its opening last night were the other big piece of news in our household this week. It looks amazing and represents a lot of what Megan has been working on for a year ad a half. Thanks to JJG and the elusive W! for coming to the opening last night. If you're not in Chicago, you should take some time to check out Megan’s site because it's full of beautiful work. Conveniently, you’re already on it. Some of my favorites are at

http://www.meganwilliamson.com/imagined-figures

http://www.meganwilliamson.com/urban-landscapes

http://www.meganwilliamson.com/international-landscapes

...actually I give up -- they're all great. Do some exploring and you'll be happier for having seen such beautiful things.

Wednesday October 31: Halloween Edition

Happy — thrilled, actually — to report that I feel almost entirely normal. Not really because I don’t have as much energy as I would have, say, a year ago, but really good in the “new normal”. I’ve been increasingly back to quasi-normal activities including (gasp) running errands all by myself.

The Zen master reveal will have to wait for a little while. Before heading to the Z’s for Halloween, I wanted to just share some recent pics. I’m experimenting with image layouts, so bear with me.

 How My Wife Puts Maple Syrup on French Toast

How My Wife Puts Maple Syrup on French Toast

When questioned how much syrup to use on one’s pancakes, my uncle Alex used to say “float ‘em”. One generation later, I can’t bring myself to fully endorse that idea, but I come closer than my wife does.

 Why Yes, I Am The World's Raddest Dad

Why Yes, I Am The World's Raddest Dad

Gavin got me an excellent coffee mug a while back that I seem to use daily somehow.

 A Lovely Wife

A Lovely Wife

Walking the dog.

Two neighborhood coffee shops, and a Halloween scarf sighting.

Sunday October 28

Friday was the “bottoming out”, I think. Feeling better again today, not quite (new) “normal” but getting close. Friday (technically chemo day 4) was characterized by super low energy, not wanting to do much of anything, just checking things off the list: Compazine and coffee with toast in the morning, late morning lie-down (with nap), early afternoon lie-down (with nap), Compazine in the mid-afternoon, and (you guessed it) Compazine, plus Tylenol at night. Watching video and doing a bit of reading was all I could manage in between those.

Yesterday, some normalizing things like going to D’s birthday party (conserving strength all day so as to be prepared for that), and playing piano, and walking the dog. Picking up steam and being cautiously optimistic that I was on the way up again. And it was the last day of the anti-nausea (Compazine, etc.) regime.

 John with Hand-crocheted Alpaca Scarf

John with Hand-crocheted Alpaca Scarf

Today, even without meds, I have no nausea (yay! it’s possible to get through at least one cycle without it), though a touch of the ol’ peripheral neuropathy (though not so much I can’t play piano or type), and my palms are a bit itchy, both expected side effects. Showering is luxurious, along with being able to raise my arms over my head without pain. I’m so looking forward to the next week of (one hopes) continued rebounding until Monday 11/5, the next chemo infusion. Had a lovely visit from G & T (not the drink, Susan, but old friends) that added to the feeling of the “support glow”, especially since it included a gift of a hand-crocheted scarf for me. About to get a visit from Ken, which I’m sure will be nice, and then looking forward to another 9 or 10 hours of sleep. On the bottom-out day, I slept 10.5 hours overnight, and also another couple hours during the day. You can’t say I’m not getting my rest.

I feel, since I’m not only not lying curled in a ball sobbing, but feel generally positive toward life, that I’m either heavily compartmentalizing or that I’m a secret Zen master. More on that later. I read this today in The Point (https://thepointmag.com/2018/examined-life/counting-steps):

The task, according to Nietzsche, is to figure out which way we are going. This is easier said than done, but an unintended interruption of one’s routine—a great sickness, a tragedy, an accident—can help. It isn’t that we should go looking for crisis but that we should use them when they inevitably come. This is one of the ways of reading Nietzsche’s concept of the amor fati, the love of fate, what I now take to be the necessary counterweight to the will to power.

Nietzsche asks us not only to bear our destiny, but to love even the most despicable or objectionable moments of existence, when the will fails us or when we employ it in ways that hurt others and hurt ourselves.  It isn’t clear that even he could manage such a feat, but he does write, referencing his own physical and psychological crises, that, “I have often asked myself whether I am not more heavily obligated to the hardest years of my life than to any others.” He often seems to answer in the affirmative.

A series of unfortunate events can create a bit of critical distance on the facts of life. “My sickness,” Nietzsche wrote, “gave me the right to abandon all my habits completely, it commanded me to forget.” Perhaps we forget or lose our habitual way of being, but we may, in the process, remember and regain something far more precious—the ability to own up the paths we have taken, and to reassess life’s worth beyond its merely conventional value. In Nietzsche’s words, “Let the youthful soul look back on life with the question: what have you truly loved up to now, what has drawn your soul aloft?” It is a very good question.

Thursday October 25

Day 3 started well since I slept 10 hours, having made my peace with sleeping with the chemo ball. Woke up and made breakfast feeling pretty chipper. But then over the course of the day, I lost energy. Not horribly - I could walk the dog with Megan, etc. but just feeling kind of wiped. Took an afternoon nap for the first time in a while (usually it’s a lie-down but no sleeping). The best thing today was that a very nice home nurse came by to remove the chemo ball, so I have a newfound freedom and range of motion, and clearance to shower, which I’m excited about. We’re working out the details of how to handle the situation one day at a time. Still very much hanging in. It’s very early days.

Wednesday October 24

First chemo started yesterday and runs through tomorrow. The main thing was yesterday where at Rush (the hospital, not the Canadian prog rock band from the 60’s and 70’s) I got a ton of anti-nausea drugs up front and then one of the two chemos plus another drug that helps somehow. I have all the details, I just don’t care that much as long as it helps. The excellent chemo nurse, my new pal Rebeccah, took a lot of time to thoroughly and clearly explain the 19 (!) pages of instructions and information. There are things to watch for that warrant an immediate call, a bunch more that can wait until the next day if not resolved, and so on. I did learn that my Hemoglobin counts are “stellar” and that basically all my blood work looks good, which I take as a positive.

Part B of the chemo is that I’m wearing a “baseball” of a second chemo on a fanny pack around my waist. It’s a very slow infusion (5ml over 48 hours). A home nurse will come tomorrow afternoon at 4 to disconnect it and cap the port, and then I have the pleasure of no one else doing anything medical to my body until 11/5, barring some issue. Not planning on that.

As always coming back from long visits, last night we were both wiped out and just sent a round of updates, had a light dinner and then retired to watch TV and recover. The “day after” hospital visits is usually a pretty low one, and that’s true today, except that so far, chemo is treating me nicely. No nausea at all, and I won’t lose my hair, and so far just hypersensitivity to cold is the only side effect. Based on advice from the doc and nurse, I do expect to “bottom out” over the next 5 days or so, but like everything else, we’ll just have to wait and see what that means.

Uncertainty is the main characteristic of this little journey, and patience is the main requirement for someone going through this. Perhaps one of you highly-educated people could remind me of the etymological link between patience and patients (as in being under medical care).

In the meantime, if anyone felt like coordinating with Megan to get us fresh flowers sometimes, that would be super cool. Zero obligation, of course.

Happily receiving all positive energy and thoughts from anyone. So far, on the case we a Tibetan monk in India, an Indian goddess, a note in the Wailing Wall, Megan’s mother praying for us and “putting her best people on it” (praying) including Megan’s long-ago passed away grandmother. And of course very much from all of you, including family and close friends. Thank you all very much for all of that. It really helps me a lot.

 “Muscles John” (son of Muscles Mike) staying strong 1 hour into the first chemo. Note Intelligentsia coffee.

“Muscles John” (son of Muscles Mike) staying strong 1 hour into the first chemo. Note Intelligentsia coffee.

Monday October 22

Hello there. Feeling reasonably good right now. Took a walk with Megan and the dog this evening, and I need to sleep now, so just a short one tonight to say that last week was a week full of lovely family visits and events, that our friend Susan thought “Rush” referred to the band of that name (we hadn’t laughed that hard in a long time) and that chemo now indeed starts tomorrow at 11 AM. I have a strange numerological fixation that leads to a not entirely rational belief that 11 is a lucky number, so I’ll take it. Wish me luck, send me positive energy, and remember to take care of Megan too.

Wednesday October 17

Just a quick story today in advance of dinner with the Chicago C’s. Also, feeling much better today than yesterday.

 The CT waiting room at Rush after our mods

The CT waiting room at Rush after our mods

Megan and I went to Rush last week so I could have a CT scan. They couldn’t have been nicer or more efficient. However we had to wait in a waiting room for 45 minutes while I consumed some delicious barium. I chose orange flavor and it was just like someone made a horrible Orange Julius. Anyway, we went into the waiting room. No one else was there, the blinds to the window were mostly lowered, and the TV was on. I turned the TV off, Megan raised all the blinds to a beautiful sunny fall day with sun on the trees, We re-oriented two of the chairs so we faced that instead and oh my, it was so much nicer. A reminder that one can still be active in a medical situation and not passively accept what has been set up. Of course, if other people had been there we might not have felt so empowered. The other reminder is to bring someone smart like Megan along with you on these hospital visits.

Tuesday October 16

Surgery yesterday to install the “port”. Really kind of interesting to me to go through that. They did a “conscious sedation”, meaning I was fully aware of what was going on but very relaxed about it all, and surprisingly comfortable. It was interesting to me to follow along as the surgeon did his work and explained to some surgery residents (presumably) what he was doing. I couldn’t see because I was “draped” in a cloth and required to look the other way. Very little pain past the initial injection of lidocaine. I left feeling a bit roughed up and sore but not in serious pain. For some reason unknown to us, the doctor apparently wanted me to be observed (vitals monitored continuously, no bathroom for me, pee in a bottle, etc.) for two hours following the surgery, and it ended up being a pretty long day. Fasting and having no water all day didn’t help anything either.

I tricked myself into thinking that if I could get a good night’s sleep (and I did, thankfully, despite the new hardware, incisions and bandages) that I’d be just fine today. And mostly I am, but a lot more tired than I expected. Thinking about it now, it seems obvious that such a day would be tiring and require some recovery. But in general, thumbs up and looking forward to time with the Z’s this evening, and with the C’s tomorrow. Special guest GB arrives Friday - looking forward to that too!

Gavin is here and his presence is very therapeutic to me. So is everyone else’s but, well, you know. He has been his usual self: kind, thoughtful, willing and able to gently tease me to normalize things. That’s a good thing we did there, by far the “thing” I’m most proud of.

I have several other thoughts I’d like to write here, but will wait for a day when I have a bit more energy.

By the way, I don’t intend this to be a daily update, so please feel free to reach out if you’re looking for the very latest and this doesn’t cover it.

Saturday October 13

An excellent dinner last night with two friends, a couple, both cancer survivors. It was so therapeutic to see them. The entire conversation was thankfully not about cancer, but they’re full of good advice and support, and most importantly, I felt that glow of friendship and warmth that is so helpful to me in these times. The same feeling that comes from visits with Jim and Cecilia, Steve and Jeanette, and other friends.

One of our friends, another cancer survivor, suggested to his oncologist during treatment that he read Plato’s Allegory of the Cave. I may subscribe to the idea (object vs. its representation, as I understand it) but mostly I just think it’s hilarious to have that kind of conversation with one’s oncologist. He also wrote “I thought I was on death’s door and now four years later I look like a film star!” Lovely to hear this kind of spirited response.

People sometimes ask how they can help. I have two answers. One, send me suggestions for movies or books that are comedic or at least light-hearted. I imagine days and weeks in the coming few months where I’ll need to be entertained but won’t be able to teach myself Esperanto, or write code to create a predictive model, etc. Two, please make sure Megan’s OK during this time, and help her too. I feel the caregiver’s role is harder in many ways than the person under care. Massages, flowers, offers to talk or run errands would probably all be welcome. We don’t have a need for more food at the moment.

Getting very excited for Gavin’s visit that starts tomorrow afternoon!

Friday October 12

What is it like having cancer, you ask? Good question. It's fascinating, truly. (Horrific as well, and so far super tiring, but we all know that.) Everything nonessential falls away and only the important things remain. We've all read and heard this many times in various forms, but it really is true. Emotions are amplified, but that includes the good ones like joy and pride - for example the boy’s first article with a UMass-affiliated site:

https://www.madinamerica.com/2018/10/community-driven-healthcare-homeless-reduces-hospital-costs/

I'm entering a mode where of course I have bad hours (or days), but also borderline Pollyanna joy in simple things like playing music and being in love with my wife and being so proud of our excellent son, who arrives on Sunday.

The phrase “I have cancer” pops into my head literally every time I wake up. Looking forward to that not happening at some point. I don’t really need my brain to remind me.

Thursday October 11

The meeting with Rush was exhausting but as good as they could make it in context. I met with 13 people, all of whom radiated confidence, competence and compassion. I feel I’m in great hands there. The plan proceeds in stages. First, a set of tests this week (CT already done this morning, endoscopy Monday, blood work already completed) that all will set a baseline and guide treatment strategy. Then installation of a “port-a-cath”, a.k.a. port to make the repeated blood draws easier… and also to support administration of chemo, but possibly the kind that doesn’t cause one to lose hair, or be too nauseous. Six “doses”, one every two weeks, starting next week. Then we re-assess to see how much the chemo has improved the situation. Likely surgery to follow where they administer chemo directly onto the tumors. According to the surgeon, one of a small handful of people who can do this surgery in Illinois (and who has done it hundreds of times), this surgery typically has good outcomes. As always, though, progress along this path is full of uncertainties.

Tonight, a special date with my lovely wife involving flu shots followed by dinner. Keeping the romance alive. So far, the best thing by far about having cancer is spending more time with Megan, and, if it were possible, falling more in love. Nothing like the threat of leaving the world to make one hold onto it more tightly. Those clichés turn out to be true.

My own treatment plan is to focus on putting one foot in front of the other, remaining as positive as I can (reserving the right to have bad days or weeks), spend as much time doing of the kinds of things that bring me joy as I can, and emerge from the end of this having proved for the third time that I’m invincible.

Update 4 PM: I got a spot of good news just now. Talked with Dr. Leslie (chemo doc), and the CT scan seems to confirm that the appendix is the source of the cancer, which according to Dr. Pappas (the surgeon) is “good prognostically“. No surprises on the CT otherwise. Also I no longer have to have an endoscopy on Monday. Chemo is now likely to start the week after next. They don’t think that the one-week delay is relevant clinically, also good news of course.


Monday October 8, 2018

Well, here we are. The hurricane is coming, and we know it will hit me. We just don’t know how much damage it will cause.

Tomorrow’s 2:30 appointment at Rush will tell us what their treatment plan is. The St. Joseph Tumor Board has already weighed in, but I’m keeping that a secret because what matters is what the Rush team recommends.

I intend to post here as often as warranted as a way to avoid having to update a large group of people some other way.