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!
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.
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.
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.
In today’s consult, I got to meet the oncologist herself, Dr. Chiorean. This was unusual, as these visits are typically with a PA. I thought I’d jot down a recap while that chat is still fresh in my mind.
First, she’s having my oxaliplatin dose reduced. Sounds like this is a fairly standard step taken in the final infusions. In her delightful Romanian accent, Dr C explained how the chemo side effects increase over time. She moved her hand in a flat line, describing the initial infusions, and then angled her hand sharply up, to demonstrate the cumulative impact in the final 2-3 infusions.
She made this call after she heard me describe my increase in side effects after the last infusion. Cold sensitivity certainly increased for me, significantly. Also, she was curious to hear about my struggles when I returned to work too soon after that infusion, and she helped me identify brain fog as the big issue there — not being able to think clearly was very stressful for me, on those workdays. She said that brain fog is one of the many side effects from Oxaliplatin. The main risk she is concerned about is that these side effects can persist for several months … or longer. Hence the reduction in oxaliplatin today.
She also addressed my questions about scans. No; nothing was missed earlier in the year. She explained how the chemo and radiation phases really do work together; after the chemo is done, is when you assess the overall impact. She said the radiation is still doing its thing for six months after the radiation treatments stop, which I didn’t realize. Scans and sigmoidoscopy will occur at some point in December.
Regarding the surgery — there’s always the chance I won’t need it (we’ll see what the scans say). If it happens, she said it might not be until mid-January — but it’s not certain yet. She moved her hands out on each side: “plus or minus … many weeks.”
I did I get a call from the surgeon, Dr Atkinson, last week. She told me she’ll be going out on maternity leave in about three weeks, so it would not be her doing the surgery. She indicated more of a late December timeframe for the surgery. Dr C and Dr A need to meet and “align,” as everyone always says at my work.
Fortunately, my neutrophils are increasing, which is what we want to see (if they get too low, as what happened before, the infusion gets delayed to a later date). So, it’s good to see that those accursed nivestym shots seem to be doing something.
I’ve been getting the oxaliplatin via IV over the past hour or so. I’m sleepy from the lorazepam, but have no fear: I won’t drink the chemo!
I am at Fred Hutch for my penultimate chemo infusion. Just got my blood drawn and feeling nauseous, hoping this will pass soon. Unfortunately I have developed a nausea reaction to the smell of the alcohol used for disinfecting — which they always apply quite liberally before accessing my port. I’m not able to completely hold my breath, so I catch some of it and am immediately queasy.
This is also part of why I hate the self-administered nivestym shots so much. Along with the nastiness of poking a needle in your belly, you need to clean the injection spot with an alcohol wipe. Boom – insta-nausea. Apparently I am a weird minority on this — according to the internet, a lot of folks seem to get relief from nausea by sniffing alcohol wipes.
I am boring, so I didn’t wear a costume today, but I’ve seen a few fun costumes here in Fred hutch this morning.
The last couple of days were incredibly busy at work, as I prepare for additional time off throughout November. It’s clear to me that I returned to work too soon after the last infusion. For the final two infusions, I’ll be taking the full week off following the infusion appointment. That means just six working days in November, so I had a lot to do, to prepare for that. I feel like I tackled that to-do list pretty thoroughly, and am happy about that — I feel freed up from worrying about work.
Well, I think the consult should be happening soon here, and then on with the infusion. I am really curious about when my next scan will be. I haven’t had any scans since April, which seems … like an awfully long time, considering I’ve been actively in treatment ever since then. No idea how effective any of the radiation or chemo has been, to date.
foiblish 