Post 510 - An Open Letter of Encouragement to Jamie Raskin

 from: Jim Middleton, Retired Pharmacist

to: Jamie Raskin, Member of Congress
1 January 2023

Let me add to the outpouring of good wishes from your friends and constituents who have learned of your diagnosis of diffuse large B-cell lymphoma.  

I am not a constituent, but I have recently shared your diagnosis and have undergone your likely upcoming protocol.

Let me say at the outset that you can get through this - heaven knows you’ve had enough pain in the past few years to get through nearly anything.   I truly dislike the tired pat phrase from clinicians that “patients tolerate this program well.”  Each diagnosis has its unique aspects, and each treatment has its unique set of responses.  While this is a difficult diagnosis to have labeled upon one, there can be worse things to experience.  However, this is still a protracted process that represents a significant disruption in a busy person’s life.   But at the end, you’ll still have a life, and likely a pretty good one.

I am presuming they’ll be going with the R-CHOP protocol.  This R-CHOP, 18 week (6 treatments, 3 weeks apart), protocol has brought me to a two year remission status from a “4th stage” (although they no longer use staging for this condition, I am told) and GI bleed-out status (from an avocado sized stomach tumor that grew in a matter of a few months).  After four of the six cycles, the scans indicated no further cancer growth, so the last two were to nudge it to a likely certainty.

The irony of receiving the treatment was that, during my years in hospital pharmacy, I compounded the CHOP portion weekly for our oncology department.  Rituximab is relatively new to the mix and seems to turbocharge the effect of the individual components - so much that, for the first treatment, it was given at the end of the chemo infusions to prevent the tumor from peeling out prematurely and causing increased GI bleeding. 

To prepare you for what may be expected, here are some effects I noted during my infusions, along with the time it took for me to recover from some of the side effects.  Again, you’ll get through this.

An IV “Port” - In retrospect, I’d suggest getting one.  They said I’d likely not need one, but - especially by the 4th cycle of treatment - my veins became far less patent for the infusion and pre-protocol blood draws.  Having the U of M hospital IV team digging around with ultrasound to find a vessel is, well, about the worst experience I had during the treatment.  

Hair loss - Yes, this in inevitable, and occurred within three days of my first infusion series.  Hair loss happens everywhere - everywhere - eyebrows and eyelashes less so (I lost about 2/3 of both).   Nose hairs? Yep.  Ear hairs? Yep.  However, you won’t have to shave but every 3-4 days.  Underwear slides on and off easier.  Shaving returns to normal at about three months after you’re done, and the hair returns, somewhat darker, but likely thinner.  Even encroaching alopecia will seem to reverse itself  - until the body realizes that if it had a mission in that department, it too can return.  Drat.

Fingernails and toenails - they thin out within weeks, becoming brittle, easily cracked, or “sliced” by a random stroke of a strand of hair or sheet of paper.  Learn to love Jello (gelatin helps) and B-complex vitamins.  It takes about six months for things to return to normal after your last set of infusions.  You can follow the ridge of the fingernails as it progresses to “new growth.”

Oral lesions - canker sores seem to predominate, on your inside cheek and tongue.  I found liquid Vitamin B complex extremely helpful.  It comes in a dropper bottle - swish it around, swallow, and do it at least twice a day.

Constipation - Yep, it happens.  All the consequential discussions I had with patients on these treatments were helpful to employ in practical practice.  Daily docusate (Colace) is your friend, and it can be as little as 50mg or as large as 150mg.  It’s a benign treatment - docusate is, essentially, soap.

Now about the drugs in R-CHOP (Rituximab - Cyclophosphamide - Doxorubicin - Vincristine - Prednisone)

Rituximab - for the first R-CHOP treatment, rituximab usually follows the other CHOP infusions - it is powerful enough that,  if given first, it can peel back an existing tumor and cause increased bleeding (during the second infusion, I sensed an actual “pop” in my stomach where the consequential tumor was located).  Sometimes it is preceded with some diphenhydramine (Benadryl) - that can cause sedation and, later, a dry mouth.  Keep sugar free candy nearby.  It helps.  I had hardly any negative infusion effects with the rituximab - to the point where they didn’t bother with the Benadryl for the majority of the series.

Vincristine (Oncovin) - from the beautiful periwinkle plant - it causes some neural damage (again, Vitamin B complex helps a lot) - I developed tingling in the fingertips and some mild tremor in my hands after routine tasks.  I began some casual physical therapy - a manual typewriter for a while, with lots of doodling with my primary hand, as if just learning cursive.  Both activities were quite helpful.  Also, I found my fingertips quickly became  “smoothed” by the treatment - so be careful if handling eggs.  Things slip from the fingers very easily.
 
Doxorubicin (Adriamycin) - It certainly earned the name “red devil.”  This is the nastiest part of the infusion series.  Ultimately, it can affect your cardiac muscle - my long-term outcome was a slowed resting heart rate (ie 50-55bpm).  A relatively short-term effect was mild hypertension (usual 105/60 went to 140/90).  The heart rate change has remained with me, but the blood pressure returned to normal after about two months.  Urine will be red for about 12 or more hours - redness may extend to other bodily fluids, but none that I noticed - watch for a blown vein during the infusion - extravasation is not to be a minimized horror (hence my recommendation for a port, it would have been especially useful by the 4th treatment, since they went digging for a patent vein at that point).

Cyclophosphamide (Cytoxan) - I experienced burning eyes during the last part of the infusion

Prednisone - on the day of, and following the IV treatment - I found it to create five days of irritability - some increased appetite is expected - plan to crave mid-morning mini-snacks, and you may have some fluid retention - most often as puffy feet.  Be sure you take it with food, or with something coating the stomach lining.  It really chews on your stomach lining.

All of these drugs will annihilate your immune system.  So, within 24 hours, you’re going to get some sort of Colony Stimulating Factor (CSF).   After six of these, you’ll have pretty much a brand new immune system.

There are a couple of options with the CSF - an automatic infusion with lots of high-tech and non-recyclable parts that costs the equivalent of a new 1996 Saturn; or,  a return visit the next day to the outpatient clinic.  The little cartridge was cute and clever, but there is some bit of fussiness with keeping it dry, and your already disrupted sleep will be complicated by trying not to lie on it.  It is also helpful if a return visit is disrupted due to weather, distance from the clinic, or unforeseen circumstances.  It has an industrial strength adhesive holding it in place.  Removal is somewhat entertaining.

With these three week cycle - you start feeling almost “normal” by the last 3-5 days, but then comes another infusion series.  It becomes most annoying near the end - impatience and apprehension should be expected.  But keep repeating, “I’ll get through this.”

Other observations:
Need a CT scans with oral barium slurry beforehand?  Go with the berry flavor.  Even vanilla becomes hard to manage after the second liter bottle (yes, there’ll be two bottles).  Coffee/mocha is utterly dreadful (we took a vote in the clinic waiting room one day).

Radio-opaque injections with the CT  - you’ll get warm tingly sensations, not totally unpleasant, but a bit of a surprise, with some possible nausea afterwards

I found the R-CHOP protocol made things taste unappetizing for a while - almost as if you can taste the added preservatives - buttery mashed potatoes were my go-to nutrition.

Well, that was a nice walk down an 18 week ordeal that had a good conclusion for me, anyway.  I anticipate you’ll feel nearly “back to normal” overall at about 6 months, and after a year, you’ll be relieved it has been a year...then two years...and onward to a long, happy and - in the eyes of we grateful American citizens - productive life.

Update - Mr. Raskin replied via his office with his thanks, referring to an equally important outpouring of cookies on his behalf. 

Third Time's a Charm! Last update: 25 June 2020

Well, this round is in a new location, with a different machine, and different challenges in the full-blown midst of a pandemic, regardless of the opinions of inept knuckle-draggers.
The technicians are doing their best to keep things upbeat, the clinic is providing free valet parking, and the valets are dressed better than I am, providing a layer of guilt for such an unattended-to vehicle for them to put out of sight for the 10 minutes each session takes, from entry to discharge.

The first stop is for a hospital employee to ask a series of CoVid questions, and the interviewer may be from nursing, radiation, or even finance.  Volunteer-created masks are generally available, and once the path to the radiation department was tracked, we generally opted for the stairway for the sake of speed and lessened viral exposure.  Hand sanitizers are placed at 20 foot intervals.

The entryway is festooned with donated art - and even a player grand piano - to soothe and calm the patients undergoing more rigorous experiences than I never hope to see on my electronic medical record.

Stained glass by Mathias Alten, from his Grand Rapids home.  He was reportedly one of my great grandfather's friends, "back in the day"

My new best friend and a new mask to scare the kiddies with, come this Halloween --- 

These treatments have been condensed from 14 to 12, with the same total number of Gray units.  The two fewer visits in morning traffic along another challenging Michigan highway is a welcome adjustment.

Two spurts of radiation with each visit, aligned to predetermined marks, including a black dot tattooed upon the lower sternum (which can be used as a guide for The Stake should the radiation create a vampiric mutation).  Alas, no whiff of ozone, no sensation of scorched bacon. 

Yet.

Session 8 completed, 4 more to go.  At this point, there is some sense of laryngeal swelling by mid-afternoon.  Swallowing is still possible, but anything moving down the esophagus needs to be well chewed.  Mashed potatoes and pudding are very, very attractive dietary options.  Fortunately, the early CoVid stockpiling of catastrophic foodstuffs assured the presence of those particular essentials.

It should also be noted that now, three months after the end of the previous radiation treatment for the MALT in the right eye, that particular eyebrow has almost returned to its earlier configuration without the need for greasepaint.

Some redness is beginning to appear along the neckline at this stage as well.  Eucerin at hand!

Session 11 completed, 1 more to go.  Now the redness has a shade of purple emerging, indicating a heightened level of burn, but still without external pain or itching.  From a local vegetarian restaurant comes a T-loaf (tofu-based), nice and soft and crumbly, and a baked sweet potato, just begging to be lubricated with some freshly churned butter (ok, freshly refrigerated).  The rest of the refrigerator is well stocked with pudding and apple sauce, and some nine ounces of viscous lidocaine is nearby, if necessary.  There are rumors that the deep freeze contains sherbet!   Swallowing has become somewhat difficult, as predicted.  This and the evidence of external burns are expected to worsen for at least two weeks following the final treatment.

It's Linear Acceleration Time! - The SEQUEL - updated 3-24-2020

PROLOGUE
Three weeks after an all clear in the left ocular adnexa, there appeared a familiar discoloration in the right eye.  A strip of eyelid to the lab later, a wee bit of a lid lift as an unintended consequence, and the U of M tumor board said, "You're One In A Million Again!" This time, the ping pong of labs, unneeded biopsies, bone marrows and PET scans were eliminated, so treatment could begin in weeks, rather than months, after the initial suspicions arose.

Behold the Halcyon above, a shiny machine with that fresh new linear accelerator smell.  It comes with its own observation camera, disconcertingly placed between one's legs.  It brought to mind an image from Goldfinger - 

That being said, a new mask was created, as the previous bit of creepiness was vanquished from the home offices as being just another dust catcher, to the chagrin of the radiology physician.  The good (I shall say very good) doctor wanted to use it for calibration.  Nevertheless, a new mask was needed anyway, as the focus was on a different side of the noggin.

ABOUT THE MASK
If anyone gets one of these face masks, a forewarning - it gets heated for pliability first, and then it generally takes a pair of technicians to apply and fold it onto and around the entire front of your head to guarantee immobility.  IT IS VERY WARM.  ONE COULD ALMOST SAY NEARLY PAINFULLY HOT.  However, the heat quickly dissipates.  For the sake of later use in the radiation process, another suggestion - leave your jaw somewhat slack (unless that's the location being irradiated) because the mask presses HEAVILY on your mouth and lips, and breathing through the mouth can become challenging, especially since the nostrils tend to get pinched in the mask making process.

You must lie still for about 30 minutes while it sets up, and the technicians and physician make little calibration marks and apply some protective faux-flesh to protect the surrounding tissues when the radiation begins.  And, as in a dentist's office, you get asked questions while your face is fairly frozen in place.  I suggest a few lessons in ventriloquism before embarking on the process.

The left eye had some of this protective material in place last year, but it was only around the immediate area of the left eye.  This time, the clinic jumped for a generous layer that covered the eye, the eyebrow, and the cheek beneath the eye.

When the mask is removed, be prepared to notice the imprint of the plastic weave on parts of your face.  My expanding forehead had a live webinar going on, and some of the remaining hairs in that vicinity were lost in the name of SCIENCE!

THE SESSIONS BEGIN
The first drive had to begin in a snow flurry along the interstate, as the cliche demands.  The shiny, new Halcyon was introduced (the homophone to the drug Halcion being brought up), legs bent for comfort (after being assured that Dr. Goldfinger was not in attendance that day), the mask appropriately placed, and everyone was cleared from the room so the bombardment could begin - bring on the Grey Units!

Appearing as Jason soon in a Halloween near you...

Session One - March 4 - one-two, one-two, one-two....
The machine hummed very softly, and once in the required position, the familiar blue cycles began, quickly in 15 second cycles, for a total of three runs.  There was a slight smell of ozone, a minor sensation of warmth, and then the nurses and technicians quickly reappeared, unsnapped the mask, made sure my face hadn't melted in the process, and then examined the inside of the mask, discovering a bit of extraneous material from the masking process that hadn't been noticed until the radiation began.  It and a stray eyebrow hair were removed, I was directed to the waiting room for my darling travel companion to accompany me on the return to the Surreal City.  We stopped at a Denny's along the way and discovered the joys of sauteed Brussels Sprouts.  Actually, that was the best part of the whole morning.

Session Two: March 5
The initial calibration session was in mid-morning, but the daily sessions were scheduled an hour earlier, a bit of a relief, since the round trip is about 90 minutes and that can be an incredible time suck if placed in mid-day.  The second visit was quick, efficient, some brief right-eye "floatie" action afterwards for about an hour, but pretty much the same.  A whiff of ozone, the three cycles of 15 seconds, and some mild warmth afterwards.  The radiology staff has Pandora playing, and it was a folk tune interrupted by an advertisement for a pillow that tried to distract me from counting the duration of the cycles.  Two down, 12 to go.

Session Three: March 6
The radiology staff runs Pandora for musical distraction during the treatments.  Last year as well as this, the "Billy Joel" channel is the preferred choice, probably to align with the general age of the visitors to Halcyon.  Today, the channel featured Bob Seger's, Old Time Rock and Roll rebooted back in the day by Risky Business, so the reference it to at least 1983, with associated memories that are worthy of a discussion in itself; and, Kodachrome by Paul Simon, calling back another decade, to 1973, when the 45rpm cost 88 cents.  Of course, I still have the record.
          (However, to demonstrate that I can let things go, I brought the staff the entire collection of the 1990s Journal of Nursing Jocularity that was being too-long ignored in the attic.)
          Another three cycles of 15 seconds, another whiff of ozone, and this time, a slightest bit of inflammation nudged from the upper eyelid.
          Through the expected snow squall on the freeway, leading to a second Denny diner breakfast, with the same waitress -- who somehow remembered not only us, but the meals we selected two days earlier.
          (And, finally amid all of this, the CoVid-19 broke its 100,000 documented cases worldwide.  We have bundles of hand sanitizers to lend our hands a hand, in perfumed splendor.  Note to self: it's hard to sanitize hands if your fingers are crossed...)

Session Four: - March 9

There's nothing quite as rousing at 5:45am (when it still feels like 4:45am, thank you Daylight Savings) as the sound of a 7 year old Sheltie regurgitating in front of the bedroom door.  So began the morning of session four, with the promise of a full moon, somehow described as a "worm moon," and a week of adjusting to the aforementioned time change.
          The drive to the clinic was uneventful, but the volume on the interstate seemed notably less than usual (or was it a projection of expectations for when Der Mittenstadt adds its name to the CoVid-19 charts).  The Halcyon did its task with purred efficiently, the zaps were the customary 3 rounds of 15 seconds, and the weekly post-session survey provided a calming blood pressure and heart rate. 
          The clinic is working up contingency plans should the outbreak manifest itself through its staff, and the soap and sanitizer dispensers were enjoying greater attention on both sides of the lobby counter.
          Hoping now for a quieter canine gastrointestinal day.  The things that ultimately matter....

Session Five: March 10

With the markets playing ping pong with our retirement plans, and with the CoVid-19 tests not all that available in Michigan, according to the clinic here, session five went smoothly, with the one minute of immobility being distracted by a snippet of Mike and the Mechanics' Living Years, which seemed oddly appropriate...then back to the workaday whirl'd, what a whirl'd...what a whirl'd... (did manage to vote - #78)

Session Six: March 11

The markets continue to tumble, Der Mittenstadt has two CoVid-19 cases now, and on the morrow, the students at nearby WMU return from their spring break from "Bob" knows where, so the session today was barely a blip on the morning consciousness.  Even the one minute clip of some folk group of the 70s (could be 1870s for all I would know) that ran during the bursts of blue didn't register long enough to note a lyric.
A bit more burn to the upper lid, but not enough to dissuade from the search for a lock-down amount of pet food to satisfy the real bosses at home.  Time to hunker in to more spring cleaning!  We counted six state trooper cars along the 40 mile interstate run east, and five on the return drive - a bit unusual, even for seeking lead-footed drivers.

Session Seven - The Midway Point! - March 12

A single state trooper edged the interstate route to the clinic this morning, and the face mask was attached to the truncated tune of "Landslide" by Stevie Nicks in the radiation suite.  A bit more burning sensation, and a quick return home with a stop to get batteries and echinacea.  We are pretty much ready for a two week hunker down should it be necessary.   And since we aren't the Hanks family or are planning a visit anytime soon to Australia, we won't know our own CoVid19 for certain.   Interruptions at this point will result in treatment resumption when possible with a visit or two added at the end for good measure.

Session Eight - Friday the Thirteenth! (March)

A slight adjustment to prevent unintentional radiation leakage to the left eye notwithstanding, the visit today went quickly.  The Halcyon makes a deceleration noise like an old Buick burning cheap gasoline when things wrap up.  The music du jour - "Sweet Home Alabama."  The trainee from a nearby for-profit college noted my retro glasses, as I noted hers.  A dozen CoVid-19 patients in Michigan now, but at least there is a list of places they were at, to give some information on the possible spread.  Cudos to our governor!
Grumpos to the return of a pair of large, comma-shaped floaters in my right eye.  I'm swatting at bugs that aren't there, and at 65, that's not a habit you want others noticing...
But I digress now into the weekend, hopeful that sessions nine through fourteen will not be postponed for any extent of illness anywhere...

Session Nine - The Skies Are Darkening -March 16

Over the weekend, the CoVid-19 began its expected, but ignored, explosion.  To help with the non-direction at a Federal Level, local hospitals have begun taking on the responsibility.  This morning, we were met by the MA who instructed both of us to get our symptoms checked before we could remain in the lobby.  Our temperatures were fine, our contacts unremarkable, so we were allowed to remain as the Halcyon was prepped.  My lovely wife was instructed that from here on, she would have to remain in the car while the treatments were performed.
          The hospital itself has begun drive-up testing, 8am-8pm, with call-ahead appointments required at this point.  At 10am, the line today was impressive.
          The radiation treatment went well, the radiology physician was beset with additional procedures for patient encounters, so the wait was longer than usual for the weekly evaluation, which, too, was unremarkable.  However, she and the trainee from a nearby college kept a six foot distance from me for all of our sakes,  I had washed my hands three times and used the hand cleaner twice while waiting.
          Returning to the Surreal City, some staples were needed.  We topped off the gas tank, proceeded to the store, and noted the generous stacks of toilet paper there for sale (being in Michigan, near Wisconsin where the TP is made, has its advantages sometimes), but a lack of hand sanitizers or wipes.  The store was crowded, the people focused but not angry or impatient; however, there was a strong sense of unease.
          We returned home for a glut of disturbing information at the health and economic level.   All restaurants, bars, theatres, and gyms were set to close at 3pm, per gubernatorial decree.  Canada has announced closed borders except for returning Canadian citizens or visitors from America.  However, those coming into Canada must agree to a 14 day self-quarantine before moving about the country.
          Session ten approaches.  At this point, there is no anticipated interruption in the treatment.

Session Ten - "It has a Thin Eerie Voice, Reminds me of poor Marsden..." - March 17

Essential supplies remaining intact, the journey to the clinic was a singular roadtrip, and the music during Halcyon's linear acceleration was by Buffalo Springfield - an oddly appropriate tune from 1966, "For What It's Worth:"

There's something happening here

But what it is ain't exactly clear

There's a man with a gun over there

Telling me I got to beware

I think it's time we stop

Children, what's that sound?

Everybody look - what's going down?

There's battle lines being drawn

Nobody's right if everybody's wrong

Young people speaking' their minds

Getting so much resistance from behind (chorus)

What a field day for the heat

A thousand people in the street

Singing songs and carrying signs

Mostly saying, "hooray for our side" (chorus)

Paranoia strikes deep

Into your life it will creep

It starts when you're always afraid

Step out of line, the men come and take you away

We better stop

Hey, what's that sound?

Everybody look - what's going down?

(repeat until you feel really, really spooked out and disturbed)

(c) 1966 Buffalo Springfield, ASCAP, SONY, any million of copyright lawyers, Columbia records, maybe even Stephen Stills

          And the clinic was updating its cleaning and viral reporting practices, trying to keep only one patient in the waiting room at a time.  I wear "out to clinic" clothes, return to my "home clothes" and hunker inside.  The Michigan CoVid-19 cases continue to climb, and with the clinic actually performing tests, those numbers continue upward.  

          I do hope for completion of the treatment, but Plan B is in the works, should the clinic get placed in "lock down" mode.

          Some signs of warmth along the upper right cheek, but much less dramatic than the process (following the identical protocol) of last year.

          The interesting improvement radiation had on the vision of my left eye last year is not being replicated in the treatment on my right eye.
          AND, to add a spectral level to the travel, an owl was perched atop the exit guide across the freeway as we headed back.

          Four to go....

Session Eleven - In the Realm of the Quieter Freeway - March 18

A joyful morning moment on the freeway

A single State trooper was on the median for the 42 mile stretch to the clinic today.   Semi traffic seemed halved, the roadside casino continued its closure announcement with a "stay well" message.
The clinic's city had its first announced CoVid-19 case yesterday, so the clinic was on a heightened alert, with oral thermometry replacing the head and jaw swipe.  Despite the chill (34 degrees), I left my jacket and sweatshirt in the car before entering.  The newly installed infection control nurse with the bright blue eyes of innocence complimented my retro spectacles, putting the probe in my mouth before I could extend my thanks.
          All staff present were in face masks, of a surgical, non R-95 variety (oddly, the hospital coordinator and overseer in the lobby, was not), including the generally chatty pair who align my head and offer comfort to my knees.  Today, they were quick and moved efficiently.  The session was complete in 90 seconds.  There was no music today.   With the lack of any consistent guidance from above, they are feeling their way on a daily basis.
          Chilled and reset into warmer clothes, the freeway beckoned, with businesses and roads approaching its access quieter.  Many Michigan counties have suspended face to face governmental business in the area.
          A non-chain bulk food store had one other customer, leaving as we entered.  We were quick in the search of frozen bread loaves among some other forgotten essentials, but those were not to be found (we have flour and yeast, should the need arise 😁).  The cashier was friendly and helpful, but I made certain that she didn't have to handle the products we purchased.  She provided us with boxes to take them to the car.
          I now slug myself for not having refilled the car's gas tank coming home.  Coming home at that point was a psychological imperative.
          Three to go.

(note to self - explore options in this blog system - only today did I notice the availability of emojis)

Session Twelve - Survival Through Shellac - March 19

Awoke to a state with 110 CoVid-19 cases.
Driving to the clinic was tense, with semis sliding off to the rumble strips, with one enormous carrier with 8 foot sewage pipes nudging my right lane while a large truck barreled upon our rear fender.  Before we could accelerate, the truck straddled both lanes behind us - and before we could really try to get away from this pair, the truck went ablaze in police lights and took the sewage pipes to the side of the road.  Sparrow curled in the back seat, refusing to accept this interstate drama.
The clinic remained in a state of alert, with staff released by closed departments, such as dermatology, being rotated into the role of door temperature monitor.  I was the fourth entry since 8am, when the current nurse took over.  At least the hospital antiviral coordinator was in face mask and gown this time, but she did a lot of ungloved face touching and hair arrangement.
I awaited my summons to the back, enjoyed two rounds of hand sanitizer along the way, and stretched out for the treatment.  Two minutes and back to the car.
          Today is supposed to reach 61 degrees in celebration of the arrival of spring, an earlier anomaly this year; however, the street was devoid of foot traffic.
          By 3pm, the 100 CoVid-19 cases became 179.  Michigan ranked #12 among the states struggling to identify, test, and treat the virus.  Three casualties thus far.
          My lovely wife thought I should know that folks with Type A blood seem more susceptible to the consequences of meeting the virus.
          Yes, I am Type A.
          For comfort, I turned to an attic filled with shellac recordings and worked on preserving them in a more easily transported format.  Audacity is a wonderful (free!) program and Audio-Technica is a workhorse of a turntable, accepting the challenge of a 70 year old disc, ravaged as it might be by generations of improper storage.   I wince at the prospects of vinyl in the attic.
          ♫ Take me away, Nathaniel Shilkret! ♫
          Two to go...

My Canadian ancestors offer moral support from 1890.  This jpg appeared as the sole file on a floppy disc from 1999.  Five daughters for great-great grandfather Jim, all posing as if they were living a Louisa May Alcott novel.

Session Thirteen - Rounding the last corner - March 20

The freeway seemed to have lighter traffic this morning, and it seemed that there were fewer semis trying to run us off the road, or perhaps it was all perceptual.  The clinic entry was staffed by a surgical nurse, realigned to thermometry duty because the hospital had closed off all but emergency surgeries.   She put on her dangling face mask as I entered, but had no eye guard.
          Entrants this time were given an official sticker noting time of entry.  I stood alone in the lobby, awaiting my turn at the Halcyon, and had an at-distance conversation on university management techniques, as her daughter had just entered into speech pathology program with my old employer; she was concerned about the odd environment there and whether other locations in the state may have a tighter focus on student needs. The conversation was interrupted when I was summoned to my spot on the linear accelerator table.  One of the clinicians was wearing a home-made mask, since the hospital was NOT receiving promised supplies.  She said that the hospital auxiliary was busy making masks for its employees.  The treatment went quickly, without music.  The redness is becoming more pronounced now, and the orbital area is increasingly tender.  The burn is not extending as far down my face as last year.
          I asked the clinicians if they knew how many tests have been run in the area, since they had one positive at their nearby courthouse for CoVid-19.  Nobody knew.
          Reports of over 500 positive tests in Michigan are based on about 2500 total tests having been performed.
          My home base of Calhoun County, with no confirmed cases, only owns that distinction from having no performed tests.  Its space includes a large VA hospital, but one can wonder if results from the VA will be kept silent, as controlled substance usage data has been removed from the discussion on local opiate consumption.
          Online commentary says Calhoun County is the "West Virginia of Michigan."  To that we can include Kalamazoo County and its flow of spring break returnees to its universities.
          Driving through the town to the freeway seemed more like a Sunday excursion, not a Friday morning event.  Gas was an issue nearing home, and the local stations were charging $1.79 per gallon.  As my wife retreated north to more rural locations, reports of $1.69, $1.61, and ultimately, $1.60 per gallon became the norm.  Supply and demand, where the demand is increasingly becoming, "Stay Put!"
       
          I found comfort in Keith Olbermann reading two short tales by James Thurber this evening.  He said it will happen on Twitter every evening at 8pm, so long as he and the stories last.  At that point, he said he'll either start over, or switch to H. L. Mencken.  Makes me want to do something similar with these little essays by Dorothy Parker.

          One more session.  Three days away.  Fingers crossed, with temperatures being taken about 40 times a day (only a slight exaggeration).

Session Fourteen - Good Day, Good Bye, Good Luck!  March 23

It was a snowy morning, of course - nearly two inches begging to be converted into snow forts.  The open road beckoned.  The session was quick, another young nurse from the dermatology department, wearing eyeglasses with "blue lenses" as a fashion statement, indicated my temperature was not an issue of contagion, and the last triad of blue bursts scalded the offending lymphoma.  Bells were run, albeit quietly and gloved, and a final farewell from the radiology department set us out on the vacated streets of Jackson.

          Follow up visits in April will be by phone.
          Returning home, Jackson's CoVid numbers jumped from one to five.  Calhoun County's went to four.  And Kalamazoo county joined its neighbors.

          Naps all around.

A later update (November 2024) - since New Year's Eve, 2020, I have been "cancer free" according to lab values and CTs, but even that early news was on the heels of further rounds of chemotherapy (not detailed here) ending in February 2021.  Counting on remission until February 2025, which will be considered "complete" by The Powers That Be, when oversight will be more of an annual check-in rather than a 6-month recurring laboratorial introspection. 

It's Linear Acceleration Time!

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)

The mask for all 14 treatments - so tight I could hardly swallow, and don't even think of having a conversation!

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:

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.

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.

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.

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:

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.