Tuesday, January 8, 1pm: The mask was tight, the radiation sensor put a bit of pressure on the eye, and the accelerator also seemed to move the table ever so slightly. The set up was about 15 minutes, and the intense blue light that followed was not uncomfortable, but it did seem to bring up the image of the "star baby" from 2001 in my mind. A slight blurriness to the left eye due to the pressure from the sensor. Seven hours later, a warm sensation to the left side of the face, and a mild sinus headache, but that's not uncommon this time of January, especially on a day whose temperature bounced between 37 and 53 degrees within a 20 mile range. I am told I can keep the mask once this three week cycle is complete. Woop. More notes to follow. System employed: Truebeam "advanced image-guided radiation therapy" (IGRT)
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| The mask for all 14 treatments - so tight I could hardly swallow, and don't even think of having a conversation! |
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| A German radiological oncologist - this lymphoma doesn't stand a chance! |
8am, January 9: Mask and fitting in place quickly, about 3 minutes in set up, two runs of blue illumination running about 15-20 seconds each. It felt warm this time. Visuals that appeared were primarily reflective of the intense light - white semi-circles along the lower left visual field. Warmth was slightly pronounced this visit, as if a 200 watt bulb had been moved around that side of the face. No blurring this time, but a small white pulsing image in the upper right field appeared, synchronized with my heartbeat. Fourteen runs are currently scheduled, not the original plan of 15, nor a local clinic's plan of 18 before second opinions were obtained.
8am, January 10: Another 3 minute set up, with two runs of blue illumination, less intense, and of 20-25 second durations. No burning sensation at the end of treatment this time. I suspect the pulsing will be an alternate day thing, with weekends without therapies being bracketed by the more intense treatment. Nevertheless, at 1.8 Gray units per treatment, the 14 sessions will represent a total of 25.2 Gray units, which is right in the middle of the 20-30 Gray recommendation for this procedure.
On the way out, an inmate from the local state penitentiary was being escorted in, literally in chains. I wonder if that counts as lead shielding.
8am, January 11: Longer irradiation (about 40+ seconds this time) at a further distance, with the same 1.8 shades of Gray. Observed that the left eye had improved reading-distance vision without glasses the night before. No other effects after this encounter. Progress report with clinician set for next session.
8am, January 14: Two blue scans running about 25 seconds each, no adverse effects, a slight smell of ozone, again as if a 200 watt bulb had been positioned nearby. Clinician will review progress in another week, suggesting a lifetime bedtime prescription of sterile Vaseline in the affected eye. Follow up oncology and ophthalmic appointments being confirmed with the referring university. The convict preceded me this time. Chains to the left, unchained maladies to the right....
8am, January 15: The most post-procedure redness yet, with two bursts, one about 25 seconds, the other 40 seconds or so. The journey there and back, amid a mild round of iced rain, was the biggest challenge. A Time magazine cover in the waiting room had a newborn on its cover with the caption: "The Future of Babies?" - If lucky, old age...
8am, January 16: #7 - the halfway point! Again, quickly processed, some post-procedure warmth and redness requiring a brief ice pack to prevent a state of constant blushing at work. Two bursts again, one about 13 seconds, the other over 45 seconds. Perhaps the gap is due to a need to recharge? Need to research this. Additional redness around the eye again, but no pain whatsoever. The 90 mile round-trip journey was only occasionally slippery.
Another magazine had an article on Chagas disease, clamping the stomach's cardiac sphincter in a condition known as achalasia, caused by the "kissing bug" Trypanosoma cruzi. I thought it was an interesting discussion on esophageal nerve damage, and then wondered if it would be useful research in GERD treatments, since an open cardiac sphincter seems to be a powerful contributor to the condition.
Here's an NCBI link - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2797592/
I know it's a diversion from a MALT lymphoma posting, but it was nice to see something other than Guns N Macho and Us magazines to look at. And don't even get me started on that odd dream about a rough landing from a space ride in the middle of a thunderstorm.
8am, January 17: And a nice quick drive today, an early arrival despite two semi's enwrapped on the freeway, only to have a pause to the festivities with a slow startup on the linear accelerator. One blast of 13 seconds, a couple of false starts, a repositioning of my arms, and then a final run of about 20 seconds. Reports are that Mr. Lymphoma is looking smaller. Some neural effects being noted - tingling along the left cheek and at the tip of the nose. The eye is still responding well to bedtime sterile petrolatum. Consumer's Energy has its building lit on every floor, in every cubicle, visible on approach. I guess they make the electricity, so they must have first dibs.
8am, January 18: Did Consumer's read my post on day #8? They had some darkened cubicles this morning! I was greeted with a, "They're ready for you. You know where to go, right?"
"Yeah, I'll follow the cookie crumbs." Passed a door labeled "Pump Room" - it isn't where the water supply comes in. Whoops. Will knock before entering in the future, but may not be allowed unsupervised hallway wanderings...
A quick routine, 13 second/40 second scans of the blue beam. The color blue lingered a minute or so on in the retinal memory. Dry roads, snowmageddon being predicted for the weekend. It's Michigan, the house has plenty of tuna and TP, so bring it on! Five treatments remain. At the end of this one, a small discolored patch was visible on the external eyelid of my good eye. Uh-oh.
en
8am, January 21: A weekend of diminishing returns on the mercury, a "Super Blood Wolf Moon" entering into eclipse, a post-eclipse lunaration into the western office windows at 5:30am, the eastern sky beckoning with Venus and Jupiter in their orbital dance, and a temperature of -11F, then -15F, then -20F (and I do mean F) for the trip eastward. The machines were adoze, and the waiting room was on the edge of discomfort. However, the treatment began after an hour delay, with two runs of 30 seconds this time, a slight burning sensation afterwards to the treated eye, and the external eyelid of my good eye looking less discolored than swollen from frequent hot packs during the weekend.
Also had a nice discussion on the physics of the photon, the theory of the proton's benefits, and the gradual demise of electron access when it comes to radiological oncology. I kept the sketch:
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| One from me for clarity, perhaps... |
Breakfast, and particularly a hot coffee cup to embrace, was especially welcome this morning.
Only four more to go!
leven
2pm, then 3pm, January 22: A combination of -20 degrees and network failures (and my thick skull) resulted in the need for replacement parts for the linear accelerator. Treatment #11 was delayed by six hours as a result. Once there, another hour-long delay set in to work in all the back-logged patients. I shared a waiting area with three gentlemen with full bladders waiting their turn for prostate treatments. The session was quick, a full 60 seconds of blue light special exposure without an intermission. The tear ducts were in full force and the ophthalmic vasodilation gave me the look of a pharmacist who has seen just a bit too much in his career. And the weather broke forth with freezing rain, turning a 35 minute drive back into a 90 minute adventure of fishtailing vehicles along the Blue Highway alternative to I-94. In keeping with the situation, the windshield wiper reservoir went dry. Today's 3pm treatment will be followed by #12 at 8am tomorrow.
welve
8am, January 23 (skipped), then 8am, January 24: The ice capade this morning was sponsored by Mother Nature. Had to cancel this visit or brush up on my skating skills. #12 will have to wait a day! Now let's hope for less ice...
"The Next Morning" or "Came the Dawn" --
The roads are passable, so Off We Go!
A continuous 60 second exposure during this run, no breaks, with redness increasing from treatment #11 and a continuation of a ticklish tip of the nose as warmth and tenderness continue to grow along the facial nerve (at least that's my story). The eyeball itself is redder with this and the treatments since #10, and sterile petrolatum is no listed as a 'drug shortage' from national wholesalers. Sterile Vaseline isn't available? Yep, we are quickly becoming an old Eastern European satellite.
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| An entertaining return ride from the treatment. |
hirteen
8am, January 25: An inch of snow, an undercoat of ice - and lo, a 35 mile drive becomes another backroads adventure taking an hour and a half. The penultimate treatment was a 15 second/45 second phase, the surrounding tissue a beet red to supplement a winter's facial rosiness, The patient immediately before me was contemplating this as his final visit, and his right eye and surrounding area was more purple than red. I suspect more than an indolent lymphoma was being treated.
One treatment remains, with a weekend to rest beforehand.
ourteen
8am, January 28: After a weekend to recover from treatment #13 - it was a scorched sensation, and it responded well to ibuprofen and some dabs of Aquaphor - it was time for the final run, with a 20 second/40 second split in the mighty blue light, with the gentle ringing of a bell to mark the end of the treatments. The mask was all mine after that, the bell a memento, and the discussion with the radiation oncologist surrounded the dramatic amount of shrinkage of the lymphoma, which should continue. The visits will be every six months now with this radiation oncologist, the primary oncologist at the U of M, and the ophthalmologist at the Kellogg Eye Center to observe for any negative changes - but from the research I have uncovered, this should hold me for 7 - 10 years, not the 10 1/2 month average response to suffering through weekly Rituxan infusions.
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| A bit of a scorch after 14 treatments |
The real news today was the weather - the ride to the clinic was a bit of a challenge at 7am, but by 9:00, the freeway was in a state of disarray with the snow and wind that we left for the "Blue Highways" paralleling I-94 for the return home. Along the way, the phone began blowing up with news that WMU was closing at noon, sending all staff home at 3pm. Since it would have been nearly 1pm by the time I could get there anyway, I called the clinic and begged off the day. By 7pm, it is fairly clear in this neck of the where, with another inch being offered, but with dramatic snow and drifting and falling temperatures for the rest of the week. In short, winter in Michigan.
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| Courtesy of my coworkers, worn the day of the final treatment. |
Post Radiation day, #2
The challenge here was not the radiation, but the continuing weather situation. The evening before, the blower on the furnace burned out. Repairs were managed on this particular morning, but not before waking up to this reading on the thermostat:
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| The number on the right is the "goal" - the number on the left is the room's actual temperature. It was -16F outside. |
It took 7 hours to bring the temperature back to 67 degrees - and then, Consumers Energy had a fire at one of its storage stations, prompting a series of loud emergency announcements on phone and cable TV that all customers should dial down to 65 degrees to prevent supplies from becoming exhausted.
Post Radiation day, #5
Saturday, Ground Hog Day (watch the movie, don't read this babble, c'mon, really). The conjunctival dryness is encroaching, taken to task by assorted over-the-counter ophthalmic lubricants, with a bedtime dose of some wildly overpriced (but briefly sterile, 'ere the application ensues) white petrolatum (aka "Vaseline" - truly, the insane inflation of all topical products over the past five years, aided by the FDA restriction on pharmacists being able to compound even the simplest of products, redefines usury), helps that factor.
However, the area beneath the eye is reddening beyond that of the time immediately following the final treatment. This was predicted, and it is rather dramatic, with the overall impression of that area actually melting. The skin tone, such as it ever was, is yielding to the forces of gravity.
Thus far, five days out, there is no apparent loss of eyebrows or lashes.
Will augment with photographic evidence as time and technology permit.
Post Radiation day, #6
Sunday, 3 February - the conjunctival swelling continues to diminish, almost to the point of making sides of the eyeball itself visible further into the socket on all sides. Rather an odd sensation. Speaking of sensations, sterile petrolatum is still the main go-to for general relief, especially for moments when the eye feels like a hot sphere of sandpaper.
Post Radiation day, #9
Wednesday, 6 February - the eye is less painful, the surrounding skin somewhat dry and crackly, and there seems to be a slow erosion of the left eyebrow. Simple eyedrops and evening petrolatum are working very fine.
Post Radiation day, #20
Sunday, 17 February - the irritated area immediately around the left tear duct has almost completely resolved. The lymphoma continues to withdraw at this point, small enough to be unnoticeable to anyone not looking for the previous, ponderous tissue. Energy level seems to be returning to "normal," which pretty much means I don't collapse when returning home from work. Follow ups rescheduled for March, thanks to the effects of polar vortices on safe navigation upon Michigan interstates. In the meantime, petrolatum and more petrolatum.
Post Radiation day, #27
Sunday, 24 February - Vision has made a shift - the radiated eye has become ever so slightly far-sighted, but with 20/400 to begin with, that's still not to be considered an improvement. It may be an adjustment from the pressure exerted by the lymphoma during the several months before treatment. Floating particles are appearing in the right eye now, some very small gnat-like bits that have me swatting at non-existent bugs, and one dark, dreamy comma that distracts from a clear view.
Also, the left eyebrow is about 1/4 gone at its distal edge at this point -- barely enough to comb.
Nose jokes stink, but eye jokes are cornea!
Post Radiation day, #48
Sunday, Erin Go Brach! - The particles still float in the right eye, and the left eye is doing well with evening sterile petrolatum and occasional artificial tears during the day. The left eyebrow has not receded further, and in fact, is beginning to fill in a wee bit. Next adventures - revisits at U of M at the end of the month!
Post Radiation day, #88
Friday, April 26 - Radiation oncology says to buzz off, ophthalmology and oncology moved the every four month visits to every 6 months, which means I've got at last seven months left in me - 6 months to the appointment, 1 month for the check to clear!
The radiated eye received the lion's share of all electronic attention, with some light spillover to surrounding tissues. The consequence of that is there is some cheekbone tenderness, as if a random bit of fisticuffs had transpired in the wee hours of the night.
The vision in the left eye has improved considerably, even with the increased likelihood for cataracts - the prescription for that lens is about half of what it has been for most of the past 30 years...makes one wonder how long an "indolent" lymphoma can take its time growing.
Unless some major change emerges, these latest notes will be the last update to this particular blog entry.
And now, on to more interesting subjects. Well, other things I have typed, anyway. Only the Russian bots seem to take note.
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