It’s 261 days ATN and 24 days since the last radiation fraction.
I’m happy to report things have improved significantly on the radiation side-effects front and we’re now moving into the pre-surgery stage. Which means I have to once again deal with the sun-worshiping medical personnel who have no concept of appropriate sleep times. It’s hot out when that big burning orb is perched in the sky. A perfect time to sleep! (I have to say the radiation oncology folks are much better in this regard. Maybe it comes from hanging out in basements where their toys seem to be stashed. They get it that 4:00 is a perfectly good time for an early day’s appointment!)
And now I’m busy doing all those things that got put off while living in the bathroom. Fortunately I have a rather large master bath and so could move a lot of things in there. But it seemed like a good excuse to avoid certain tasks. Like taxes. For the past nine months I’ve been working on postponing death and taxes should fall right in line shouldn’t it? Well it appears Uncle Sam is nowhere near as accommodating as the Grim Reaper. And to add insult to injury it appears that $30k of insurance premiums, deductibles, and dental expenses from last year nets me a grand total deduction of… (drum-roll)…$0. I hope the Reaper pays a visit to the IRS soon. He should have some free time on his hands since it appears my appointment’s being pushed out. Or maybe I’ll get hit by a bus. As long as its soon so I can stop poring over tax forms.
To cut to the chase, just look at the MRI results to the right. It seems all that suffering through chemo, and chemo-radiation in particular, was well worth it. The tumor is no longer visible on the MRI! This doesn’t mean the cancer is gone. I still have an upcoming visit with the surgeon. But the purpose of systemic chemotherapy and chemo-radiation in Total Neoadjuvant Therapy is to shrink the tumor so that surgery can be performed with minimal tissue removal (but still with good margins). As my oncologist messaged shortly after the radiologist posted his results, “Good news on the MRI!” To have the tumor not only shrunken but not visible on the MRI is the best outcome I could have hoped for! (Part of me was convinced that the scans would show minor shrinkage or even a slight increase. The oncologists themselves are very conservative in talking about what to expect. I’ve come to learn they’re a superstitious sort and believe they could jinx things by talking about best-case outcomes.)
Scheduling the MRI was something of a nightmare – just as I remember the pre-treatment MRI being at the start of the journey. After radiation was complete my oncologist was ready to bring the surgeon back into the picture, but of course the surgeon wanted to see the CT and MRI prior to the appointment. Makes sense to me since otherwise he would be speaking based on assumptions on how the chemo and radiation went. To put this in context, the CT and MRI are the first time we get to see what effect treatment had on the tumor. There were no mid-treatment or periodic scans to monitor progress. I think it sort of goes like this: “You’re feeling crappy during chemo? Great! It must be working.” And: “You’re having some issues dealing with crap during radiation? Great! It must be working!”
In any case I was thrilled that my oncologist’s nurse volunteered to schedule the MRI (and CT). It was late in the day so she said she’d get the appointments the next day. And true to her word the next day she had the CT appointment done but said that radiology could only do me a month out. The MRI should really be done in a week or two so surgery wouldn’t be held up. So my oncologist was marking the order “stat” and radiology was going to reschedule other patients to slot me in. She also said she wouldn’t be in the following but that radiology would follow up with her backup and she’d get back to me in a couple days Great! I love this nurse.
Well the sneaky people in PAMF Palo Alto radiology decided to call me directly the next day (while the nurse was out) and told me they couldn’t see me (i.e. oh no its the guy who cut the chemo pump line and caused the radiation therapy machine to fault! Quick get rid of him!) They wanted to foist me on their unsuspecting colleagues in San Carlos or Dublin to schedule with them. Dublin is rather far away (the one in the Bay Area is just slightly closer than the one in Ireland), so I called San Carlos. The earliest opening they had was a month out. Hello, wasn’t it just established that a month out is too far out? Well I decided to take the slot and message the nurse. The next day when the nurse was back in the office she called me and was quite concerned that the appointment was a month out. She was going to check with the surgeon’s office to see what he thought and then asked, “did they [radiology] call you?” I get the impression this isn’t the first time this has happened. And I don’t know what she did, but an hour or so later I got a call back saying my MRI would be in a week and a half. And in Palo Alto. I have this vision of her walking over to radiology with rolling pin in hand and saying, “You will bring that schedule in or you’ll be needing an MRI!” (Don’t ask me why nurses would be carrying rolling pins. But its a lot better picture than threatening someone with a clip board or whatever else you usually see them with.)
So this is the third MRI in the journey. I had two pre-treatment MRIs. One identical to the one I was having (and at the same location in Palo Alto). The other pre-treatment MRI was of the liver when they tried (and failed) to figure out what those “numerous small hypodensities” were. The liver MRI was held in what the nurse at the current MRI called “The Dungeon.” Which is appropriately named. Its in the basement. And the room looks like its in the basement. It would fit right in with the decor if you lay in a coffin rather than a table that slid into the MRI donut. This MRI is on the second floor in a much more nicely appointed room. The Dungeon MRI is apparently an older model and didn’t have headphones while this one did. (Except that they forgot to turn on the music. I was told that I’d be listening to jazz during the scan. I was wondering if they were featuring Buzz & The Alarm Clock Group since that’s all I heard – for those of you who haven’t had an MRI, the machine loudly buzzes at various pitches and sounds alternatingly like an alarm clock and a large truck’s backup signal.) I remember The Dungeon tech mentioning that he hoped they’d soon get an upgrade and maybe patients would be able to don video glasses during the scan. (I can just see it now. “Ok Mr. Minakami we’re all done. You can go now.” “Hold on a few minutes – the movie’s not over yet!”)
The Dungeon is a lower resolution MRI. Apparently a higher resolution model is required for breast, rectal, prostate and other scans. Which partially explains the difficulty in scheduling the scan. Not just any MRI would do. Plus the order was for with and without contrast, which means a longer appointment (this one was for about 70 minutes).
I was given two pre-scan instructions. First was to come well-hydrated. No problem. Used to that from the radiation therapy sessions. Second (and this was repeated most emphatically) my bowels had to be empty. Now this worried me a bit. At the time the appointment was scheduled my bowels were emptying – and refilling – at a rapid rate. So even if I “voided” them before leaving home who knows what state they’d be in when the scan started? To make sure things would be OK I decided to do the same prep indicated for the EUS back in July. The day before the scan I had a couple slices of toast for breakfast. Then liquids only until the scan (which was at the ungodly hour of 7:30 am). I did take Miralax the evening before as recommend. Let’s just say I don’t think that was needed much and that eliminating things that would end up in my bowels seemed to do the trick. The radiologist was apparently OK with the state of things since no mention was made about my bowels. I’m sure they’ve got enemas and such around Just In Case they can’t get a good scan. And after the scan the nurse thanked me for being so patient and that I could now go to the restroom – a rather full bladder was apparently evident on the scan. They did say to come well-hydrated after all!
The radiation oncologist was thankfully right: things would get worse for a week or two after the last treatment and then get better. The two and a half weeks after the last treatment were excruciating. I’m convinced that there was a tear or something inside the rectum (which would have made sense since that’s where the tumor was, and where the radiation was focused). It would certainly have explained the very painful BMs. But fortunately around two weeks after the last encounter with the TrueBeam things stabilized. And a week later I felt it safe to be away from the safety of bathroom for a couple hours.
Some people have wondered why things would get worse after the last treatment. Try to imagine getting a sunburn. While you’re in the sun it feels great. Then as the days go by the skin starts to crack and peel. Eventually it heals up. That’s basically the same thing that happens with radiation therapy. Except that the affected area is inside your body. Well mostly. The beam still has to pass through tissue to get to the tumor. The machines used to deliver the radiation dances or rotates while always focusing on the tumor. The idea is to spread the “collateral damage” across as large an area as possible so they’re affected to a much lesser degree. But (or butt…) a few days after the last session I did develop a minor sunburn-like area on my backside. And no, I did not go sunbathing at a nude beach. (And if I did I’d be on the lookout for anyone wielding a magnifying glass!)