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.

moderate response

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?)

Onc talk

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!

Radiation complete

I finished up my 5 weeks of chemoradiation yesterday and rang the bell, while the radiation therapists gave me a round of applause. I was surprised to learn that this is a relatively new tradition, dating back to 1996. It is a gratifying feeling, actually, to commemorate the milestone. Cancer treatment is an extraordinary amount of work (mentally, physically, emotionally) — so, a graduation-esque ceremony is fitting.

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Radiation boss level

Just as they told me: side effects are worse this week. Sunday was bad; a lot of nausea and trips to the bathroom. The doctor had recently prescribed diazepam (Valium) to reduce (possible) rectal spasms. I took one of those, and that certainly helped me sleep.

Monday morning I was well-rested and everything was great. But shortly after my 3:15pm radiation session, the waves of nausea came back, along with some abdominal pain.

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Sunday Lucid Sunday

A M-F chemoradiation schedule means that Sunday is a relatively lucid day — the brain fog dissipates. On this Fathers Day, I have been scurrying through to-do lists, taking advantage of this opportunity when I’m thinking clearly.

As Princess Kate rightly mentioned a few days ago:

….as anyone going through chemotherapy will know, there are good days and bad days. On those bad days you feel weak, tired and you have to give in to your body resting. But on the good days, when you feel stronger, you want to make the most of feeling well.

Just two weeks of chemoradiation to go! I’m feeling excited about that, along with some trepidation, as the final week (and the week after) are typically the worst in terms of side effects.

Yesterday, I was still chemo-foggy so I did simple things, such as picking a bunch of strawberries from out front. It’s amazing that all of these strawberry bushes came from a few starts that someone gave me, a few years ago.

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For health, for strength — for eating fun.

Wrapping up my third week of chemoradiation treatment, I can say that the side effects have gotten more pronounced, day by day — as expected.

  • In my first week, I had some mild fatigue. In my second week, those side effects became more noticeable: I’d forget things, feel generally slow and lacking in energy. I also started to feel some intermittent nausea in week two. All that was the capecitabine: the chemo pills.
  • But in the third week, the effects from the radiation started to kick in: intermittent burning sensation (mild) in my rectum, intermittent periods of bathroom urgency, pain while pooping, and pain while peeing. Occasional butt pain when I’m just sitting (seems most noticeable when I’m driving). All that stuff kept me up last night; I was in the bathroom a lot. Which meant I was sleepy and slow today.
  • Brain fog seems to be the worst on Monday evenings, after dissipating on Sunday (I don’t take the chemo pills on weekends).
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