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About Jonathan

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A peek behind the scenes

Early yesterday morning, I headed down to the KING 5 news studio in Seattle to join a fellow CRC cancer survivor and discuss the upcoming Seattle Walk to End Colon Cancer. Before we went on the air, we got to hang out in the studio area and it was fun to watch the producers at work.

You can see the clip here, and it’s live TV, so there are a few moments where I slipped up, but we definitely got the point across.

They cycled through some photos from last year’s Seattle Walk event, and this one of me brought back (very hazy) memories. I was connected to a portable chemo pump at the time, and I was very bundled up due to cold sensitivity, which is a common chemo side effect. It’s a reminder of everything I was going through last Fall, and it does me make happy to be through with that!

A peculiar power

At some point during treatment, I started following this blog, where an author writes about her cancer treatment experience (and much more). Her post today jumped out at me:

In those months of chemo, I’d worried my mind and imagination might dull, my fierceness lessen. Six weeks out from surgery, I’m diminished in body but a peculiar power blooms in me. A determination to do what I want. An impatience with artifice. 

Well put! Without question, chemo dulled me mentally last year; thankfully that doesn’t appear to have been permanent. Nowadays, I too am reveling in life and vitality.

Among other things, I’m continuing to serve on the planning committee for Seattle’s 2025 walk to end colon cancer. Through this work, I’ve met many fellow colorectal cancer patients and survivors; most of them younger than me. June is National Cancer Survivors Month, and as I celebrate the conclusion of my treatment experience, I recognize many others still going through treatment, and also those who have sadly passed away. My heart really goes out to the 20- to 40-somethings who keep getting hit with this. They need all the help they can get, going through all the scary complexity of cancer treatment. Please consider joining me in supporting this year’s walk: https://impact.ccalliance.org/team/650712.

Resuming gardening

I don’t believe I did any gardening last year, during cancer treatment. I know I didn’t plant any sunflowers, which has been an annual tradition for me, for several years. Well, now that treatment is behind me, I’m happy to be back in the garden.

We’re just starting to see some ripe strawberries. My 10-yr-old ate the first ripe one we spotted; pictured is the second:

Planted a few dahlias amongst the strawberries –

Stay tuned for sunflower photos in a few months!

Officially NED

I confirmed today with my care team that yes, it’s official, I am NED as of May 9! This means:

  • I am now in what they described as “surveillance mode” — they’ll be checking on me periodically. My oncologist said ordinarily I would now do scans every 6 months (with bloodwork every 3-4 months) but she needs to check the stipulations of the clinical trial I participated in last year. I am pretty sure the scans are more frequent with that trial.
  • The port will come out — I’ll no longer be a cyborg!
  • The active topic now is focusing on my continued recovery from the recent reversal surgery. It’s all about what comes in, and how frequently it goes out. I did get the green light today to expand my diet. Psyllium husk powder every day is working well for me, and I’ll continue with that.
  • My only concern from today’s visit is that my bloodwork from this morning shows that my white blood cell counts have dropped a lot — lower than they ever were during chemo last year (and they were quite low then). They didn’t seem too concerned, suggesting this may be a delayed reaction to radiation, but that doesn’t seem right to me. Radiation for me was a year ago (happened last May-June). I asked them to check into this further.

Clear scans

I went in for CT scans this past Friday and I am pleased to report that these came back clear, with encouraging summary details:

No metastases or adenopathy in the abdomen or pelvis.

No evidence of metastatic disease in the chest.

I am pretty sure this means that I have now officially joined the NED club, but I’ll confirm that on Thursday when I meet with the Fred Hutch team for check-in appointments.

My CEA was also checked on Friday; that has also come down, which is a good thing. My latest CEA count is 3.2, down from 6.7 last May (checked right before I started radiation).

This is the first of my post-treatment scans, which will continue I believe over the next five years — I think every 4 months to start, and then they will get less frequent with successive clear scans.

All around great news!

Life after reversal surgery

Fortunately, things have been much easier with my reversal surgery than my prior surgery, back in January. With my reversal, I was discharged from the hospital two days after the surgery took place. I’m back at work, as of yesterday. My energy levels are good; there were just a few days of fatigue. And my pain at the surgical site has improved; I was able to manage it with just Tylenol after I was discharged, and I haven’t had any Tylenol since yesterday morning.

An hour or so before the reversal surgery took place, back on Apr 18, a resident physician (who worked with my surgeon on the procedure), spoke with me briefly about what to expect with the surgery. “Did you give it a name?” she asked. After a few moments of confusion, I realized she was talking about my stoma. I told her no, I never named it (although I did observe this to be a thing that other folks do, noted in the ostomy subreddit and other places). She seemed to be ready to comfort me with any grief I had about the loss of the stoma through reversal surgery. Nope … I felt no sadness about the end of that phase. Yes, it was a pretty enlightening experience, having the ileostomy, but I am certainly ok to move on.

On the morning of my discharge from the hospital, that same resident came by and helped change my dressing over the wound site. The wound was “packed” (gauze was coiled inside the hole in my stomach) and I watched with somewhat horrified fascination as she pulled out that blood-soaked gauze, and applied new dressing. I’ve been doing this same routine on my own, every day since, along with a thorough cleaning of the area via a shower. The hole is already closing up — pretty fascinating to track its progress every day. When I first got out of the hospital, it looked like this surreal second belly button — not too far away from my actual belly button — and a bit wider. Just to clarify, this hole did not go all the way into my innards; the resident explained that it stopped at the layer of my abdominal fascia.

Other than those daily cleanings and dressing changes, the main challenge post-reversal has really been adjusting to having a functioning colon again — with a rectum that is now considerably smaller. I have read several stories of folks dealing with LARS after their reversal and I was prepared for something similar, myself. But things seem to be largely ok with me in the bathroom area, after an initial period of constipation (which I was able to address via Miralax). Bowel movements are certainly more frequent, with associated urgency, but I’m already seeing improvement with this as well, day after day.

I continue to derive tons of helpful information from the Colontown family of online forums; yes they have one specifically dedicated to all things reversal (“Reversal Roundabout.”) From there, I learned that a first order of business for many folks after their reversal is to restore their gut’s bacteria through probiotics. The challenge is that with a reversal surgery –as with the LAR surgery before it — you get stuck on a restrictive low-fiber diet, which excludes most of the effective dietary sources of probiotics. So what a lot of folks do, I learned, is drink kombucha, at least up until their dietary guidelines loosen up again. I had never actually tried kombucha before, but decided to give it a shot, starting around a week ago, and I quickly realized I love it! Tasty and refreshing!

A week from now, I have CT scans at Fred Hutch; assuming all is clear from those, I’ll finally be able to start saying I’m NED. Of course, you never know what the scans may reveal. I’ve been tracking a variety of stories in Colontown, and of course not everything is positive. Someone with a Stage 3 diagnosis who started chemo on the exact same day I did, last year, just got news that her cancer is metastasizing and she’s now stage 4. I’ve also read recent posts of stage 4 patients passing away. These are notably poignant when it’s the patient themselves sharing the news of their upcoming demise. That said, I do not have “scanxiety;” instead I’m aware of the spectrum of possibilities that may come out of any CT scan, and will take things one step at a time.

Another radio interview

I was interviewed for another radio spot recently, along with other CRC survivors in the greater Seattle area — here’s the link for this one (I’m at the beginning).

I also went in yesterday for a barium enema — this is the first of two diagnostic appointments that need to happen, before my ostomy reversal surgery scheduled for Apr 21. All seems ok, based on the real-time feedback they provided during the procedure, and the summary now available in mychart:

1. Status post low anterior resection with patent end-to-end anastomosis and no leak of contrast seen.

2. The remainder of the large bowel is normal in appearance.

For folks like myself with an ostomy, the barium enema procedure is easier in some ways — you don’t have to do any of the bowel prep that is normally required. They did ask me to bring in supplies for an ostomy bag change, as there is a possibility of the contrast flooding the bag and causing it to burst. Fortunately that did not happen (although some contrast eventually made its way into the bag, later that day).

I did get a helpful piece of advice from the ostomy facebook group that I follow — to bring an adult diaper to this appointment, and put it on immediately after. This is because that contrast solution — which is all inserted through the rectum — gradually seeps out, for quite a long time. I was surprised to find that it was still coming out, well into the next day. Yes, fun fun. But glad the results are good. Next step: endoscopy on Apr 14, right after I return from India.

#DressInBlueDay

Today is #DressInBlueDay: a day for spreading awareness about colorectal cancer. I sported blue in the office today, wearing my shirt from last year’s Seattle Walk to End Colon Cancer.

I am really loving being a part of my local CRC community; we’ve got an active text thread today, sharing photos of ourselves in blue. And we are all gearing up for the M’s game on March 30. These tickets are selling fast, but there are still some available, here: Strike Out Colorectal Cancer Day

Lots going on throughout March, as it is #ColorectalCancerAwarenessMonth. Learn more: https://bit.ly/25MarchAwareness