Author Archives: Jonathan

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About Jonathan

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Whoa!

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It was just yesterday when I posted about my participation in the Seattle Walk to End Colon Cancer, and my fundraising goal for this event. In the past 24-odd hours, my team received a surge of donations and we surpassed my team goal by a healthy margin. Amazing!

Here’s what I sent out to the donors and team members earlier today:

My mind is totally blown by all the donations that came in, over the past 24 hours! We’ve blown way past my goal. Wow!

I’m touched, seriously, feeling the love and support from all of you — and I’ve got to call out, way to go, Lenati alumni network!!  All the lovely folks who I worked with at Lenati Consulting, back in the day have really been the driving force behind this recent wave of donations. Many have gone on to other ventures over the years, and there also many who have remained with Lenati, as it has evolved (now part of a much larger company, Concentrix). 

We are all part of multiple social circles, and this past day has me reflecting on the power, and the magic really, of these networks. Amazing. I am grateful.

If you scroll down in the Seattle Walk page, you’ll see my team is now in 3rd place for fundraising for this event; Natalie and Brianna are in the lead (with team names much more interesting than my own). They are the cancer survivors I met with earlier this year, both very inspirational. Brianna actually is the person who started the Seattle walk.

I’ve been reflecting on something they said to me in that conversation. They both noted that I’m unique — because there’s a notable lack of male team captains in this event — and in related cancer advocacy causes, in general. Seems to be mostly women leading the charge. On a similar note, in the Colontown forums (amazing resource for colorectal cancer patients and caregivers — highly recommended), I can’t help but notice all the posts from women, on behalf of a man in their life. Why? This is ridiculous. Why are men not capable of going into these types of forums themselves, and doing their own research? I very rarely see the converse (men posting in the forum on behalf of a woman). This is embarrassing. Dudes — let’s step it up. Stop being babies.

Seattle Walk to end Colon Cancer – coming up!

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I confess I have not been doing the best job in promoting this, so I’m going to try and correct that now — the Seattle Walk to End Colon Cancer is right around the corner (Oct 5)! A few months back, I got to connect virtually with the amazing folks putting on this event (both of them have survived stage 4 CRC diagnoses), and I’m excited to support them however I can. I put together my own team page for the event — replete with a cute photo of my dog, back when he was a fuzzy little puppy in the snow. Totally not relevant, but it’s a good fundraising tactic … maybe?

I want to express huge thanks to the folks who have helped with donating to my team and also mobilizing others to donate, such as my friend Jessica Didion, who put together her own page and whipped up many donations – amazing!

In addition, huge thanks to others who have assisted with this — my sis Katy, and Dorje, and Henry. THANK YOU!

I’ll be making sure to get thanks out to all the folks who have already donated as well. At this point, my team has raised an impressive almost-$4k — making very good progress against my goal of $5k. You can donate here — also feel free to spread the word!

If you’re in the Seattle area, you are also absolutely welcome to swing on by Gas Works Park on Sun Oct 5. The walk will start from there at 10am. I am planning on being there (arriving 9 – 9:30am), but realistically, I won’t be able to do the walk, as that’s my next “pump disconnect” day. Those are typically pretty challenging days, in terms of chemo side effects — I’ll have a pump attached to me at the time, delivering chemo into my body, and will be going to Fred Hutch later that day to get it removed. So my plan is to definitely be there, make an appearance and say hi to folks, and then go back home and crash in bed.. sucks, I really wish it were an off week, so I could actually participate in the walk. But that’s how it goes.

Thank you, thank you again to all of the folks who have offered generous donations thus far, and those who have helped get the word out. I appreciate y’all very much!!!

Infusion the Fourth

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This past Thursday, the 19th, my 4th chemo infusion finally happened. (It had been rescheduled, and then rescheduled again).

Learning my lesson from past infusions, I was all bundled up, and a lovely blanket (thank you, Aunt Donna!) kept me nice and cozy.

This infusion went .. dare I say it? Not bad. Certainly, much better than the prior two infusions. There was no nasty mania to contend with (which was the problem with infusion #3).

I believe much credit for this is due to the changes that I requested through prior negotiation: no antihistamines, and the inclusion of lorazepam (Ativan) up front. While they didn’t completely avoid antihistamines this time, they left out the Zyrtec, which was clearly the culprit for me going crazy last time. They still insisted on my taking Pepcid (another type of antihistamine), and fortunately I didn’t react to that. And, lovely lorazepam helped keep me calm.

So – lesson learned: cancer patients, advocate for yourself during the treatment process! Consider approaching the discussion like I did — as a negotiation. For me, this really worked.

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Assume positive intent

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I’m grateful to my neighbors who, after learning about my diagnosis a few months back, have coordinated on sharing home-cooked meals with our family. At this point, six different households on our street have given us meals. That is really cool actually, just to reflect on this generosity and kindness.

Tonight, as I ventured out on a walk with the dog, I ran into the neighbor who orchestrated all the meal-sharing, and I heartily thanked her. I felt self-conscious about being out and about, acting so healthy and … non-cancer-y. (Like, wait, was my “serious illness” just a ruse, to get a bunch of free food?) I explained that my chemo infusions have been on a bit of an unplanned pause … that my next infusion will be this Thursday, and after that I’ll be properly incapacitated for several days. (Seriously, I have cancer .. I swear!)

I am eager to get back on track with the treatment plan. I’m all done with whatever was bothering me last week. My appetite has returned with much intensity; I’m happy to see my weight going back up again, day by day.

G.I. No

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Wednesday before last, I went through an abrupt gastrointestinal shift. Two and a half weeks after the preceding infusion, I started experiencing nausea, diarrhea, and considerable loss of appetite. I hadn’t experienced any of these symptoms (other than minor nausea) with chemo, previously.

The following night was a tumultuously sleepless gastropocalypse with intense, recurring bouts of diarrhea. Nausea got increasingly worse, until I eventually vomited multiple times, in rapid-fire succession. I don’t vomit very often (it’s been years), but I just don’t recall it ever being this … extreme. I got hot and sweaty, and my eyes and nose were both streaming. My throat was sore for hours afterwards, like everything had been chafed raw inside.

Non-FB link

Delirious at 4:30am, desperate for a distraction, I stumbled upon “Believercise.” And verily, it didst suffice to bemuse me, and my soul was calmed. Somewhat.


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I had a calculator watch in the 1980s

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If you remember the 1980s, do you remember calculator watches? I remember I used mine so much that the tiny little buttons wore down. I also had a Frogger watch; it was tons of fun. It looked like this:

I was apparently so obsessed with these ‘80s technological wonders that I even dreamed about them. For example, this dream from Feb. 11, 1987 (I was in 7th grade):

Me and some other people were being held hostage by these crooks. The crooks had all these weird gadgets that they had stolen at different times.

One of the gadgets was a calculator watch. It could compose music! It could save up to 37 songs that a person made. In the directions, it said that the button that controlled the volume looked like this: 1/2.

I never could find that button.

Pivot

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I headed to Fred Hutch yesterday for chemo infusion #4, accompanied by my sister Katy. Lo and behold, after they drew my blood, they determined my white blood cell counts were too low for me to proceed with an infusion yesterday. They went ahead and rescheduled the infusion for next Wednesday, allowing time for my body to naturally build back up its white blood cells.

(By the way, check out Katy’s latest blog post about hiking, here!)

My care team is also going to have me increase the number of Nivestym shots that I self-administer, from 5 daily shots up to 7. While I don’t particularly enjoy sticking a needle into my belly (and the subsequent mild flu-like sensations, which last for 30-60 minutes), I understand the reason for doing this. I don’t want any future infusions to be canceled and rescheduled, if at all possible. This makes trying to maintain a work schedule incredibly difficult — not to mention the fact that Katy traveled up from Eugene, OR, for yesterday’s canceled appointment. Fortunately Katy was able to find a train south yesterday afternoon, but I still feel bad about the inconvenience of the cancellation.

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A marketer’s take on mortality

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I have a unique combination of a philosophy undergrad degree, coupled with an MBA. After earning the MBA from University of Washington, I spent several years in various marketing roles. Given my background, it’s perhaps no surprise that this article, published today, deeply resonated with me: Creative directing my cancer.

The author, Nathan Phillips, explores how a cancer diagnosis can open one up to deep insights, which I agree with:

Cancer connects us to our values, to what’s important and ultimately can shift our perspective so we appreciate living. Without cancer, it’s easy to forget. Cancer doesn’t just kill you, it makes you live. It increases your life experience by reducing your life expectancy. 

One key difference between this author’s situation and my own is that he received a “death timeline” of one year (maximum!) which he has now exceeded. To be clear, I received no such timeline; in my own kickoff discussion with my cancer care team, back on May 2, the message was upbeat: this is Stage 3 and it’s treatable.

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There’s also other things

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A cool thing about being 50 years old is that there are a lot of years to look back on and appreciate. I find it helpful to realize that, although cancer absolutely defines my current life experience — and is in many ways similar to massive, complex project management initiatives I’ve worked on — it does not define my entire life.

I was up to other things in past years. Fun things! For example, 14 years ago, I lived in Manhattan, and one time hiked the length of it. Looking back at the post, it’s surprising that the free map app I used at the time is still around; the map of my route is still in there. So many other free apps I used back then have long since died. I’m actually surprised my old blogspot blog is still around (with a link to a posterous blog, that long since died).

So, I may indulge in nostalgia now and again, to add a little variety to this otherwise cancer-focused commentary.

As a child, I was an obsessive chronicler of life’s mundane moments. Seriously, I have hundreds of pages of journal entries describing meals, what I learned in school that day, who was present at youth group, etc. Fortunately, I also kept a dream journal, and that’s a lot more interesting to review.

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Back to the land of the living

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I am feeling normal-ish today for the first time since last Monday morning. This past week involved, I believe, the most intense fatigue I’ve ever experienced. One way to describe it is simply that you’re not fully alive. For example, I worked (as well as I could) this past Friday, and I was in a meeting with many participants. In the meeting, I felt like a ghost, peering into a gathering of alive people: people whose brains function normally. It was similar to the experience on my diagnosis day — everyone sure seemed to be talking awfully fast. And normally, I am one of those people.

But this past chemo week, I was a ghost who spent much of the time in bed. Ordinarily my brain moves quickly in a multi-threading fashion (maybe everyone’s does?); there are usually a few things going on in parallel, one idea sparking another. All that shuts down when I’m a chemo ghost.

So, high level observations from chemo cycle 3:

  • The on-site infusion experience was so godawful BAD. That feeling of my jaw clenching, and the manic jitters all day long… holy hell, what a nightmare. I am all about medically mitigating these horrors in future infusions, via my friend lorazepam (aka Ativan).
  • As noted, much more fatigue this time, over the subsequent days.
  • As with cycle 2, pump disconnect day was hard. I drove myself to that appointment, but in retrospect, that was unwise. I was way too brain-fogged to be operating a vehicle. I’ll be enlisting chaperones for the remaining pump disconnect visits.
  • More nausea this time. It’s still not something bad enough where I feel I need to take the anti-nausea meds they gave me, but if it gets worse in future infusions, yes, I may give those a shot.
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