Tag Archives: health

Expanding the diet

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My cousin Kelly will be starting chemo soon, and we’re meeting up this evening so I can bestow upon her the icing kit that I used with many of my own chemo infusions, last year. We discussed meeting up for dinner, and I realized I had a conundrum: is there a local restaurant I can actually eat at, given my current restrictive diet? My go-to is always Asian food (Thai, Japanese), but I can’t eat vegetables, or peanuts, or virtually anything else that is healthy …

After puzzling over this quite a bit, exploring (and then striking out) many options, I sent a message to my care team at Fred Hutch, asking if they had any advice on this. I was happy to hear that they are ok with me beginning to expand my diet, at this point. They explained:


First, you can now advance your diet to include more fiber slowly as tolerated over the course of a couple weeks. The goal here is to introduce fiber one food at a time, chewing well.

Second, you can think about the shape/size of the food to assess the blockage risk. If it is a large chunk, it should be well cooked and/or well chewed.

Third, focusing on soluble fiber first is best as soluble fiber dissolves in water and doesn’t cause bulk, but you can start introducing all kinds of fiber one at a time.

Cool! I am happy about this. Still, however, I wasn’t sure about a restaurant. I was considering Indian food, maybe somewhere where I can get dal or something like that, but it seems like my initial experiment with new dietary options should be at home. Kelly and I have solved this issue by settling on meeting up a dessert place. That’s easier for me — it’s strange but true: less healthy, more processed foods = easier to do with an ileostomy.

But hey, I am very, very ready to move back towards a healthy diet. I mean look what I was doing, back on the morning of my first chemo infusion last summer — an insanely healthy smoothie with chard, kale, various berries .. gotta get back on that train, as this is a key part of the lifestyle to keep my cancer-free, moving forward. So my first venture into healthier eating involves a lentil soup, that I made last night. It includes:

Important to note, after cooking up this soup, I thoroughly pureed it in the blender, to reduce risk of any issues from the lentils. Had this for lunch today (combined with some white rice), and it’s tasty!

I’m realizing a blender is like your best friend, if you’re looking to eat healthy with an ileostomy. Next, I’m planning on starting to incorporate some greens (baby kale) into my smoothies and see how that goes.

A more positive take

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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 next nurse I met with is an ostomy nurse; a very helpful and informative session about preparing for life with a temporary ileostomy. This surprised me: she had me lift up my shirt, she pulled out a marker and made a couple marks on my belly where they’ll do the ostomy incision. She put stickers over those — the plan is to keep those marks on me until 1/3 — kind of strange. And she gave me an Ostomy Home Skills Set© (yes, it has the copyright symbol) — which includes another marker that I can use to re-do the marks on my belly.

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.

Goodbye Nivestym shots!

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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.

Sleep is good

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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.

Onwards and upwards.

Chemo infusion #6

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This round has hit me the hardest — particularly the last few days. Interestingly, the actual infusion day (last Thursday) was pretty uneventful. I felt surprisingly coherent as my friend Dorje gave me a ride home that afternoon. Pump disconnect day (Saturday) — which sometimes has been one of the more challenging days — also wasn’t too bad. The following Sunday and Monday, however — wow. Hard days, filled with periods of abject suffering: the typical mix of constantly-changing chemo effects (numbness, tingling, queasiness, sore throat) with some new elements: headaches, chest pain, and a weird extreme sore throat sensation that extended to my chest.

Cold sensitivity has increased, but that’s manageable and it’s the least of my worries. I have a system now where I always have a few glasses of water set out, so that they are at room temperature. Drinking water straight from the refrigerator is very unpleasant (feels like there are extremely cold shards of ice going down my throat). Also, I’m always wearing gloves when I head outside.

There’s a point where physical suffering is so extreme that you cannot distract yourself from it; it completely commands your attention and you’re just waiting for it to end. I was in that zone, over the last few days. Last night, I woke up at 1:30am and stayed awake through the remainder of the night. Lying down made things worse for me (I’ve had this before, a few times) — when I was lying down, the side effects were more extreme, especially with my throat (it felt like it was tightening). So, I couldn’t sleep until the side effects calmed down, which was 10 or 11am. It was a horrible night.

I know I have said this multiple times, but it strikes me how during these periods when I’m suffering through the effects of chemo, I do not feel like myself. My normal self is very planny, always striving, ticking through mental to-do lists. That self completely disappears, and is replaced with a zombie (as I often describe it) — prone to periods of staring, doing nothing. Also, certainly weirdly emotional. For example I read this article about Jenna Fischer and her experience with cancer, and that made me cry. I spend a lot of time just looking at art (in Facebook groups). I do not generally remember much of these days.

This afternoon, I believe I turned a corner for this cycle, and once again, started feeling like myself again. Still not 100%, but much better than the past few days. I am planning on returning to work tomorrow, unless I get hit with another sleepless night. My Mom recommended trying to sleep in a recliner (if I have more of the issues when I’m lying down); a good idea that I may try out tonight.

Only two more infusions to go! Next one is on Oct 31 … hmm, should I wear a costume?