Two weeks ago, on December 1, 2017, Teresa and I went in to
Memorial Sloan Kettering for what we’d hoped would be the resumption of my
chemotherapy. I hadn’t had any actual treatment since October 20, because my
blood work had revealed that my liver was inflamed, presumably a reaction to
the chemotherapy itself. I’d had very good luck up until then in avoiding the “toxicity”
that chemotherapy can cause, but once it arrived it had to be dealt with. From
October 20 on, therefore, the treatment I had been receiving was not
chemotherapy but a steroid, infused into my liver via the same intrahepatic
pump that had been the vehicle for the chemotherapy.
Anyway, we arrived on December 1 and learned that Sloan
Kettering had already decided to continue the steroid treatment for another two
weeks. We didn’t actually see the oncologist (who may have been out of town);
instead, the nurse practitioner who works with the oncologist told us what the
plan was. In fact she told us that I’d be getting only steroids before the
results of that morning’s blood work were even available. That meant it was
possible that I’d be getting more steroids for a liver inflammation that the
blood work would show was no longer perceptible. But that wasn’t what the blood
work showed when the test results came in a few minutes later; it appeared from
the tests that my liver, though much better than it had been on October 20, was
still in somewhat shaky condition. So – two more weeks of steroid. The one
bright point was that the steroid dose was being somewhat reduced, to start the
process of gradually taking me off of it.
Even though this all made sense, it was also worrying. By my
next appointment, scheduled for yesterday, December 15, I would have been
without chemotherapy for 8 full weeks. That, we thought, couldn’t be good as
far as keeping the cancer in check was concerned. So I asked if I could get
scanned again to see what was going on with my tumors, and this was arranged
for Wednesday, December 13, so that the oncologist would have the scan results
when we saw her on December 15.
The MRI on December 13 was a bit of an adventure. (The MRI
covered my midsection and lower abdomen; I also had a CT scan of my upper body –
that was quick and easy, unlike the MRI.) I’d had some difficulty with my
previous MRI as well. At one point the MRI technician had told me that I should
“breathe normally”; this instruction I found really unhelpful, since I wasn’t
sure in what way my previous breathing had been abnormal. Then later they did a
series of quite quick images – I’d hold my breath for about 5 seconds, instead
of the 20+ seconds I’d gotten used to – and this series seemed to go on
forever. Afterwards – but only afterwards – the technician told me that I hadn’t
been breathing right. Apparently the machine, or its operator, just repeated
each image until I finally held my breath correctly, but no one explained that
this was happening or told me what I was doing wrong. I'm glad to say that MRI’s do not
bathe you in dangerous radiation (as I confirmed on the internet later that
day); otherwise I would have been very upset.
Still, I was still dismayed enough about my last MRI that
on December 13 I made sure to tell two or three different staff people that if I
was doing something wrong I needed to be told what it was so I could fix it.
The technician on the 13th did just that; I can’t fault him at all. Sadly, knowing what was wrong did not enable me to fix it. The problem:
I kept falling asleep.
One might think it would be impossible to fall asleep during
an MRI. If you’ve had one of these, you know that throughout the 45 minutes or
more that the test takes, you are simply bombarded with loud noises. There are
many different noises, perhaps corresponding to different inflections of the
magnet that is creating the Magnetic Resonance Images. I have to say that while
I can understand the idea that bending a magnet would make a noise, I don’t at
all understand how it produces the variety of rhythmic noises that in fact
accompany an MRI. But one thing is clear: it’s noisy.
Noise, however, doesn’t necessarily keep me awake. I feel
asleep once at an NBA game! It certainly didn’t keep me from falling asleep
during Wednesday’s MRI. The problem with falling asleep was that when I did so
I also began breathing more shallowly (which must have been the abnormal breathing
the technician had complained of in the previous MRI). Again one might think
that shallower breathing would actually be good for the MRI, since it would
mean that everything was staying more in one place. But evidently the MRI is
designed to compensate for the patient’s normal breathing (a nice computational
feat, it seems to me), and so when what it encounters is less-than-the-normal
breathing, it produces images that are blurred.
I was trying hard to stay awake. I reminded myself that this
was really important; I tried counting during each breath; but despite my
efforts I would catch myself dreaming and even though I thought I was catching myself
quickly, it wasn’t quickly enough. In the end the technician decided to have me
do more of the “hold your breath” images – I was pretty good at holding my
breath as instructed, and stayed awake while I did so – to compensate for my failings
at other stages of the test. It was a relief to learn from the oncologist on Friday that the resulting images were good enough to read. And the technician didn’t report
me as a bad patient, as the oncologist told us they sometimes do! Actually, the technician said to me
afterwards that the MRI can put patients into a trance – I’m not sure that
quite describes what I experienced, but I was glad to know I wasn’t alone.
One more thought about why I fell asleep: I was sleepy. Why?
One reason is that I’ve been having trouble sleeping – which may be partly due
to the steroid that I’m being continuously treated with. I’ve done a surprising
amount of reading in the small hours of the morning, but it seems
like every minute of being awake at the wrong time costs you double later on in
the day when you really want to be awake. For instance, during your MRI. The MSK
folks prescribed a sleeping pill, but this pill’s side effects include things
like sleep-walking, sleep-driving, and sleep-cooking, and those scared me. They
also scared Teresa, who anticipated nights of her monitoring me to see what I’m
sleep-doing next. So I haven’t tried these pills. Fortunately now the
oncologist has suggested over-the-counter Benadryl might do the trick.
Anyway, I didn’t fail the test, and on Friday we got the results. The oncologist was very pleased, and I think a bit surprised. It turned out that in the 54 days that I’d been without chemotherapy, most of my tumors had gotten smaller; a couple had grown modestly (a couple of millimeters) but the oncologist said we didn’t need to worry about those. All of this was really good news. (What accounts for this good news? I don't think anyone knows for sure, but the oncologist had suggested even before this scan that the chemotherapy I'd already received might still be in my liver, even many weeks after the last dose was administered. We'd begun to think that that just meant I was continuing to experience the medications' uncomfortable side-effects, but these results suggest that I'm getting the primary, curative effects too.)
The oncologist had decided that I should have another two weeks of steroid treatment, which a few days earlier would have worried me; but with this good news about my tumors’ performance over the previous weeks, I felt quite comfortable with postponing the return to chemotherapy once more. And all the better that Friday’s blood tests, when their results came in, showed my liver was improving. Meanwhile the steroid dose was reduced again; I think what I’m receiving now is about one third of what I started off with. With all this, it seems as if the logical next step will be the resumption of chemo at our next appointment, on December 29, or soon after that. The whole thing adds up – and I mean this without any irony, or at least without much – to a holiday gift.
Thanks for the update! Best, =jwt
ReplyDeleteA nice holiday present! Best, Howard
ReplyDeleteWonderful news. My husband, who is also stage 4 Cholangiocarcinoma received his PET scan results and CA19-9 earlier this month as well. His oncologist was also surprised; all of hubby's numbers were almost normal and the scans showed improvement on his tumor. This was our holiday gift as well. The oncologist said, "I be too be honest with you. I didn't expect you to be doing this well so soon. Also, your type of cancer is notorious for not responding to treatment, yet here you are. So now I'm going to make your life more miserable and and a second chemo." We had previously been only doing Gemzar. He said anything else would do more harm then good. But now (we've only had one treatment since) he is on Abraxain and Gemcitabine. The only bad news, none of his mutations are treatable with immunotherapy at this time. Best wishes to you.
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