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 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.
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.
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.
I cannot believe it’s already March — this year is flying by. March is a big month for the colorectal cancer community. We’re dressing in blue on March 7, and our local PNW group is partnering with the Mariners to promote Strike Out Colorectal Cancer Day (Sunday, March 30th).
Meanwhile, I’m happy to report that my “dietary scope” is expanding. This past Friday, I met with an ostomy nurse at Fred Hutch, and she said at this point (2 months post-surgery) it’s fine to start experimenting more with food. So, I’ve taken some baby steps this weekend; I had an impossible burger and some fries at Red Mill with my kiddo Friday evening, and last night I had some split pea soup that was definitely chunky (carrots, celery etc). I seem to be doing ok thus far, so that’s encouraging.
Smoothies continue to be the cornerstone of my daily diet — here’s what went into my smoothie yesterday: generous amount of baby greens (from Trader Joes), frozen banana, frozen mango, apple, avocado, tree nuts (I’ve been alternating between walnuts, cashews, brazil nuts), peanut butter, and pea protein powder. I start off the day with these, and then continue to consume it periodically throughout the day.
My lesson over the last few days: post-surgery fatigue can be pretty intense! And for me, it’s notably different from the fatigue that I had with chemo.
Everyone’s experience with cancer treatment varies, but for me, chemo fatigue was mental: my brain was mush and I don’t generally remember those periods. Post-surgery fatigue, by contrast, is totally physical. My mind is ready to go, but my body says: not so fast.
Yesterday, for example, was a very fatigue-y day, with four naps. These were not “fun naps” involving reading or something. No, these were full-on sleep. My big task for yesterday (interrupted by a nap, and a meal, and a period of staring out the window) was changing out all the trash bags in the house, and bringing the trash / compost / recycling outside.
The day before, I possibly pushed myself too much — I took our dog out for a walk around the neighborhood. I was completely exhausted at the end of that, and maybe (?) still recovering the next day. Or, maybe recovery from surgery isn’t always a neatly predictable thing.
Last week, I actually made up a dinner of pancakes and eggs (trust me, things were a lot harder last week … so this was an accomplishment):
I hit a wall, big time, at the end of that — actually I remember I started to fade before I had made all the pancakes; my sister Katy told me hey .. why don’t you take a break there .. but no! I stubbornly insisted on finishing up all the batter, and then collapsed into the recliner, totally spent.
Today was a pretty good day. I am listening closely to my body. I had enough energy to go out for a 15-minute walk –
That was good for the day, and the rest of my time I’ve spent active inside on various tasks. And one big afternoon nap.
I met with the surgeon (and team) this past Monday. The day started off bright and early with a sigmoidoscopy, and I feel like that gave a more positive perspective on what chemo + radiation has accomplished inside my body. I should start by saying that being wide awake for a sigmoidoscopy is …. an unsettling experience (just google it). But after the camera went in, I was surprised to see … no tumor. Way, way different from how it looked in the past sigmoidoscopy, back in May (before I started treatment). That initial procedure described “a fungating and polypoid partially obstructing mass.” By contrast, in this week’s sigmoidoscopy, that scary-looking mass was gone, replaced by white scar tissue. This was honestly encouraging for me. I get that there is still some tumor remaining (embedded in the layers of tissue that surround the rectum), hence the “moderate response” terminology in the recent MRI summary. Next month’s surgery will take care of that. It was just encouraging to see that visual contrast in the sigmoidoscopy results.
All in all, very positive meeting that day with the surgeon and the nurses who work with him. The nurses provided me with a binder of information (like a 100 pages) on preparing for the surgery, and life after surgery, etc. A week before the surgery, they advised me to start adding Immunonutrition shakes to my daily diet. My dairy allergy doesn’t allow me to take the Ensure Surgery product they recommended, but they’ve worked with me to determine how to get what I need via alternate means: additional protein, fish oil supplements, arginine powder. Just ordered the arginine powder on amazon, it’s apparently a product favored by body-builder types. This photo was in the amazon listing for the arginine powder I ordered, so I fully expect it to make my arms look like this:
The surgery itself will have me in the hospital 3-5 days. Jan 2 (the day before the surgery) will basically be the same process as prep for a colonoscopy, along with a few other minor elements. I’ll be taking the entire month of January off (FMLA + short-term disability) to allow sufficient time for recovery. I’ve been in the process of sharing this information at work.
For now, I’m continuing to enjoy the month of December — post-chemo, pre-surgery — a nice respite.
Got my results back from last week’s MRI and CT scan. Although I have not yet discussed with the care team (that happens next week), it’s clear that surgery is a go. The MRI results describe my treatment response (this includes all the radiation and chemo I’ve gone through, for six months) as “partial” and the overall tumor regression is categorized as “moderate” (TRG 3 — see categories below):
Clearly surgery is needed to take care of the rest. So I’ve been looking into how much time off from work this will entail. Based on what I’m seeing in the Colontown forum, looks like I’ll need 4 weeks off after the Jan 3 LAR surgery — and then another 4 weeks off after the reversal surgery (which I believe will happen in the April timeframe). What needs to be reversed, you ask? It’s the ostomy: technically, the ileostomy which will be created in the Jan 3 surgery.
I’m actually currently at a work “off-site” summit meeting in North Carolina — and feeling good, by the way — the timing for this was perfect (post-chemo, pre-surgery). Got a chance to meet my new boss (he’s based in India) and reconnect with many colleagues. I’ve started to spread the word with these folks about the upcoming surgery. It’s really weird having cancer and knowing when/how to bring this up at work. I shared the info back in early May, with a small group, and strongly encouraged my colleagues to share the news on my behalf (I don’t really enjoy telling people directly). While many at these summit meetings knew about my situation, many also did not, and it’s been a little odd to explain the whole thing — although everyone is very supportive. I have received many big hugs.
Next week, I meet with the surgeon on Monday, and then do a scan review discussion with my oncologist on Thursday. While fortunately the CT scan indicates no metastasis has occurred, it does say there is “mild coronary artery calcification” — Google indicates this can indicate a risk of heart disease, so that’s concerning. I’ll ask about that next week (assuming that I’ll be directed to follow up with my primary care physician?)
I’m back! My last of the Nivestym shots (self-administered, to my belly) was last night. I will not miss that unpleasant evening ritual AT ALL! Really, the worst of it was the smell of the isopropyl alcohol as I applied the antiseptic wipes to my belly, before the shots. I started to associate that smell with the chemo infusion process (much isopropyl alcohol is used, as your IV port is accessed), and it made me nauseous — I had to hold my breath while I dashed off to stuff away the wipes in a trash can. All done with that!
And yes, I am done with chemo (for this year). It’s been a surreal experience, going through these biweekly hibernation cycles. My sis Katy was up for this last round; she got there on the afternoon of my last infusion day. I was already descending into the “zombie zone” at this point:
Katy helped out in innumerable ways while she was up here (thanks Katy!). She was staying at a nearby Airbnb and got me set up there for a few blocks of time in which I was really able to rest up (and sleep in) – a nice treat! The fatigue was deep again for me this last round; there was much horizontality.
And, plenty of chemo thinky thing (I saw this pic recently in a post in the Colontown online forum — I love this):
The cognitive effects of chemo — I found those to be really frustrating, and I wonder to what extent these resemble early-stage dementia. Ordinarily, I believe I’m a pretty decent communicator — I enjoy expressing myself, in talking and writing. But in the days after each infusion (especially the last few), communication became this stressful, difficult experience. I couldn’t remember what I had said before. Words escaped me. I got frustrated.
For example, one night last week — when all the stormy weather was happening, with the power outages all over the Puget Sound area — I had some of my worst side effects ever from chemo: throat pain, tight jaw, waves of dizziness. I got worried when I tried eating a bit and it felt like my throat started constricting. I ended up calling Fred Hutch to check on this — but I felt like I was making no sense in the phone call. I remember being embarrassed when, after I had rambled for a bit, they asked me if I could, um, summarize for them. What was the primary reason for me calling them? I apologized and explained it was my throat constricting — I was worried about an allergic reaction, to the oxaliplatin. They helped to put me at ease about that, explaining to me that it was too late after the last infusion for there to be an allergic reaction like that. I guess it was just more of my reactions to chemo — as anticipated, hitting me the strongest at the end.
At any rate, I have returned to the land of the lucid. Now, there’s a big question whether I will need surgery or not. Likely it’s a yes, but I don’t think I’ll get an answer on this until Dec 9. This Wednesday, I’ll be at Fred Hutch for an MRI and CT scan — those results, along with a sigmoidoscopy from the surgeon on Dec 9, will determine whether or not surgery is happening for me, come January.
In the meantime, I’ve got to say, I’m really happy to take a break from treatment for the time being. I get to enjoy the holidays this year! I don’t seem to suffer from scanxiety — I’m honestly excited to find out what the heck is happening, via the scans this week, and I’ll post updates here about that, in the upcoming weeks.
Good news in the scheduling department; I’ve got some key appointments recently confirmed:
Wed. Nov 27 (Thanksgiving eve): Doubleheader with MRI and CT Scan. I’m happy these scans are actually happening this month, instead of December. As I’ve been quite anxious to learn what this long slog of radiation & chemo has accomplished.
Mon. Dec 9: Sigmoidoscopy and prep discussions with the surgeon. I’m assuming at this visit I’ll learn if I will indeed be undergoing surgery, or not. There’s a chance — they said around 20% — that the radiation & chemo may have completely wiped out the tumor (and affected lymph nodes), thereby rendering surgery unnecessary.
Fri. Jan 3: If it needs to happen, surgery will be on this date. This is a Low Anterior Resection (LAR) surgery.
This past week has had its ups and downs, basically as I expected. I am thankful (again) that I took the entire week off from work. In my down periods — which don’t really happen on a set schedule — the brain fog continues to mess with me.
I did have a chance to get out for a couple walks today; that was the most exercise I’ve had since before Halloween. Seattle in Autumn is a time steeped in sweet nostalgia for me, always bringing me back to my first year in college in 1992. As I was out and about today, I listened to music that was on heavy rotation for me in that time period. R.E.M. — particularly Reckoning — was in my ears likely every single day throughout the early 90s. Today, So. Central Rain really took me back:
And the Sundays … I’ve waxed nostalgic about them before, way back in 2012. Although I do espy one little white lie in that post: I didn’t have an actual Walkman — not the name brand version, too expensive! I think my portable cassette player was made by Sanyo or some such brand, and was suitably low-cost. The classic Sundays track for me will always be Here’s Where the Story Ends –
This song vividly evokes those Autumn 1992 memories for me, those solitary walks up and around Queen Anne hill in Seattle. Those first months of college were so exciting, and thoroughly formed the foundation for the rest of my life — but I recall it was also a very exhausting time, and I found refuge in music. As I still do, to this day.
foiblish 