December was really enjoyable, a very relaxing time. It’s been great to be able to enjoy the holidays, post-chemo (and pre-surgery). Currently I’m gearing up for surgery; this has involved a daily prescribed immunonutrition regimen — basically these guidelines, but tweaked slightly to accommodate my dairy allergy. For me, that’s involved mixing Ripple vegan protein shakes, Ensure plant-based shakes, arginine powder, walnuts, bananas and other fruit blended into a smoothie (which I consume in portions, throughout the day) … along with five of these per day.
Tomorrow: no more food, basically the same regimen as colonoscopy prep, along with some extra guidelines. And then on Friday, I check in at 5:30am(!) at UW Montlake for surgery. I’ll likely be pretty out of it this weekend, recovering from surgery in the hospital. I’ve given my sister Katy access to this blog, so she can post updates on my behalf during that time. She’ll be coming up from Eugene tomorrow and helping out during the surgery process (thanks Katy!).
I was just at the local drug store (one of the few remaining, after many of them were shuttered over the past year), picking up some prescriptions related to my upcoming surgery. (Neomycin and Metronidazole — I think both of these are to prevent infections during the surgical procedure).
Very long line in there to pick up prescriptions. Long enough that multiple folks abandoned the line.
Finally, finally I got up to the counter and they asked for my date of birth. I said it, but oops, they couldn’t hear me, so I repeated it — oops they couldn’t hear me, can I speak up? So I had to shout out APRIL 30 1974. Loud enough so allll of those many people behind me could clearly hear it. Good times
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.
I’ve been recovering from infusion #8; the last of this series of chemotherapy appointments that have been occurring since July.
Just a quick post here, as I’m still dealing with brain fog. Communication in general has been challenging for me since last Thurs, but hopefully things will get better here in the next few days, and I’ll get more of an update posted.
Fortunately my neutrophils are looking good today, moving in the right direction due to my nivestym shots. This means I am cleared for takeoff and can safely do today’s infusion. The neutrophils (a type of white blood cell) typically get reduced significantly due to chemotherapy. If they are too low — as was the case for me back in early Sept — they have to postpone the chemo appt. So, very glad to see that.
On a completely different note, I must thank my sis Katy for introducing me to Brooklyn Nine-Nine. I just finished the first season of this wonderful comedy. Highly recommended — I am finding that anything that helps you laugh during a serious illness and treatment stuff — is a very good thing.
Today is number 8, the final infusion in my chemo treatment process. Very exciting! I am here at Fred Hutch; just got my blood drawn and am waiting to do the pre-infusion consult session.
No smoothie this morning (made one yesterday), but I had plenty of fresh fruit and berries. When I have a chance, I like to make the fruit look nice and pretty, to entice my 9-year old into eating some in the mornings.
Just like last time (in the days before infusion 7), I had a flurry of activity at work over the last three days. It’s like an island of lucidity that sits wedged between a big lake of fatigue on either side. Got to take advantage of it while it lasts!
It was honestly a positive thing for me being back at work, albeit briefly, this week. In the week prior, I was dogged by feelings of guilt and inadequacy — feelings that I am failing both at my role as a parent, and my role at work. I suppose all of that is normal for folks dealing with a chronic health situation.
But this week — this island of lucidity — I’ve had some wonderful quality time with my kiddo, and at work I feel like I was on my game and contributing in meaningful ways. All of which is very validating.
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.
I have been floating in a haze of fatigue since my Halloween infusion. This cycle, the notable side effects are fatigue and brain fog. I’ve felt this combo before, during radiation and prior chemo cycles, but never quite like this. I simply don’t remember large portions of the last four days.
Here’s the good news: I’ve actually been able to sleep (a lot!) and thus I have escaped the trauma that afflicted me during the prior chemo cycle. I believe three things have helped:
My mom gifted me with a reading pillow, which my friend James graciously delivered to me last week. It looks like this and allows me to sleep in a propped-up position. This helps address one of my chemo side effects: intermittent issues with lying down completely flat.
I prepared very thoroughly for this chemo cycle. This involved a lot of work tasks (I’m taking this entire week off, for example), and non-work stuff, such as voting and bills. This freed me up to fully rest when the fatigue hit in full force.
I was smarter about using lorazepam (Ativan) when I felt the bad signs coming on (basically the mix of anxiety-inducing symptoms I described in this post). Arguably, I’ve been too cautious about using lorazepam in past cycles. My prescription is a low dose (0.5mg), with instructions to take “1-2 tablets by mouth 3 times a day, as needed for anxiety.” In the past, I’d been hesitant to take it during the day, but this cycle, I’ve found that two tablets are incredibly effective in helping me bypass the bad stuff, via a solid daytime nap.
It is odd, and unsettling, to have barely any memory of such a recent period of time. I do recall a very strong craving for mashed potatoes (but literally I don’t remember the day or time when this happened). I didn’t have the energy to make any, and instead I opted for “The Gobbler” — a magical vegan Thanksgiving feast in sandwich form, from the good folks at Next Level Burger. It was very very tasty, and hopefully helped me in the weight-gain department (it’s 500+ calories).
Also on Sunday afternoon, I took advantage of a period of lucidity to make up a batch of chili — mostly based on this fine recipe, but I added lentils, kale, corn, and went for a sweet (instead of spicy) flavor, with some maple syrup and cinnamon. Really hit the spot.
Last night I was blessed with a very happy dream — no scary nastiness — it involved me in a filmmaking class, working on a project with fellow students. Lots of fun and laughter, with a sense of hope and discovery. I woke from that dream feeling calm and well-rested. I’ll take it!
Even though I am currently feeling peppy, I’m sure this will change in the coming days, so I’ll keep following my playbook-of-sorts and resting when I know I need to rest.
foiblish 