The chemo pattern and items

11 July to 28 September — chemotherapy cycle

Back some months, my good intentions included frequent (and timely) posts. But I let quibbles about building a blog, whether to make it independent or hang off Wordsmith, and etc string out the process.

Failing that, this Plan B is a summation of the pattern, the items, and the exceptions—a quick take on the experience.

Pattern.

Every two weeks on Tuesday drive to MGH, make way to Yawkey 7th floor for labs and conference either with Dr Jill Allen, medical oncologist, or nurse practitioner Emily Olson. Chat about CBC, side effects (neuropathy, GI tract, sleep, appetite, fatigue, general body condition, weight) and such. If blood counts within reason, to Yawkey 8th floor/infusion center. Three-four hours in chair, 5-FU with pump attached to portal, drive home. Two days later (Thursday pm) pump beeps to signal all done. I remove pump from port, flush port with saline, then with heparin. Friday through Saturday eve the rough days of recovery from poisons. GI tract slow to rebuild, head feeling lousy, no energy reserve. Gradually get better ’n better until—start all over again.

Items.

“Chemo fatigue” — deep, debilitating, and not lessened by naps. Exhausted, lie down for hour or so—and get up feeling as fatigued as before. Only workable solution: do something. Walk. Mow the lawn. Ride the bike. But takes oomph to get up and out. Partly related to catabolism—muscles disappearing.

Hair — falling out in chunks, finally easier just trim it all.

Neuropathy — Fingers, especially right hand, thickened, lose feeling, gain acute cold sensitivity (e.g., touch milk bottle in refrigerator, electric shocks from fingers through hand up arm.) Not confined to hands. Morning walks with Char, when air turned cold, tingles started in nose, spread across face.

Chemo brain — literature documents it, but I can’t remember it. Unless I forgot it.

Appetite — shrinking. Height of chemo, mouth feel of most foods unpleasant. Especially first days after chemo. A primary goal (not to lose too much weight) fading. But solution found. Damaged GI tract can’t process much when it’s recovering. Complex stuff (raw fruits, veggies, multi-grain) especially unwelcome. And omg does the tract let me know (middle of the night) how it doesn’t like those foodstuffs. So occurred to me that highly processed white stuff might be the answer—easy to get down, easy for GI tract to process. And the best example, the premier product of the culinary cupboard (ta da):  Ramen noodles. Tasted okay, went down the pipe just fine, contributed whatever they could to my being, and exited gracefully. Shrimp preferred, any flavor accepted. My saving lunch food for the entire chemo cycle and into radiation.

Coffee—From however many cups a day to one, and even that often half-drunk, going cold in the cup. Nathaniel scolded me: “Dad, somewhere in Central America there’s a guy who just lost his job–and it’s your fault.”

First encounters

15-16 July

Learning–what it was about these past four days. The poison pump just becomes a part of life, sort of. Worries about rolling over on the tube in sleep–not a problem.

But what’s in the pump (5-FU) is messing up the DNA of not just tumor cells but many fast-replicating cells. Like, most consequential, the lining of my GI tract. By Thursday night, it’s mostly gone, takes 3-5 days to regain much function. Meantime, body still needs protein–which it gets through catabolism, going after lean body mass (e.g., muscles) until GI tract regains some function. On the outside, it’s exhausting.

Complicating these days, aiming to stay ahead of nausea, I hit anti-emetics hard–some of which are severely constipating.

The combination meant by Friday night a lot of dead stuff was pushing hard to exit my GI tract, coming up against stalled peristalsis.  A combination not wished on worst enemy. Friday night painful, tough; something busted loose around 6 am, and it felt (and smelled) like some dead evil thing leaving me.

Char and I had to clean camp for renters–so Saturday it was nothing to do but suck it up and mow, rake, clean basement, and vacuum. One foot in front of the other. Couldn’t keep much on my stomach; by time we drove out through Georgetown, however, some hunger appeared. Char stopped at the general store. I’m scanning shelves, refrigerator for something, anything, and there it was:  V8 juice.  Body said: git me some of that, quick.

And it worked. No idea why, but few things have felt so good, so right, as that bottle of V8 juice–on the tongue, all the way down. The first of many bottles. Plus gained a small insight: listen to the body. It will tell you. And it has.

 

First infusion

11 July – Tuesday 

First infusion today—which looks to be a pattern for all four — plus two more if scans show progress, for total of 3 months of chemo. Drive to MGH/Boston (Fruit Street parking garage, for Boston types) mid-morning.  Char with me this first time—not just to check out free lunch, I bet.

Routine starts with registration—double-check name, DOB almost every point of contact. Blood drawn (“labs”). Must be a fast process, because within a half hour we’re meeting with Dr Jill Allen, medical oncologist—review labs, any last questions. Brief, not terrible informative—but then, we don’t have many questions before the process starts.

Then up to Yawkey eighth floor and the infusion center. I’m in a heavily padded reclining chair—a medical La-z-boy. Mikaela Arruda, RN, hangs the bags and connects hoses to my port. As it happens, Mikaela will be my infusion nurse for all except one of the sessions.

I don’t know (or better: don’t remember) the sequence of drugs that drip into my system over the next 3-4 hours. The  formal protocol name is FLOT-4. It’s not experimental but new. Hasn’t been published yet;  results were announced at a European forum this past spring. Appears I’m one of the first at MGH. The basis of the protocol is to pump all the chemo and radiation into me before surgery (neoadjuvant) in a specific order, the better to clean out micro-metastases and shrink the thing to prep for surgery. I’ve had cautions to “stay ahead of the nausea” and for this I’ve got three prescriptions for anti-emetics of varying strengths.

FLOT:

   Fluoruouracil (also: 5-FU)
Leucovorin
Oxaliplatin
Taxotere

Over the next 3-4 hours, I also get steroids, anti-emetics, hydration.

The first time, it seems long. Char and I talk. I try to sort feelings, but I’m too busy with the stuff to listen. Volunteers come by pushing carts of sandwiches, drinks, small ice cream packs. I can’t recall the last time I had a Hoodsie. On the steroids, appetite wide open. Two of everything (turned out two much).

Finally, Mikaela disconnects all the hanging stuff, hooks up to my port a small pump with an attached bag (“cassette”) of 5-FU. All fits in a small black bag that hangs from a shoulder strap. Mine for two days. No swimming.

By 4 pm we’re on I-93 northbound. With lots of other people. It’s been a long day of new stuff. I didn’t realize how tired I was.

Overview – a long haul

8 July – Saturday

Met with Dr Allen (chemo oncologist) and Dr Wo (radiation oncologist) Thursday last (6 July) for evaluation and report from PET/MRI scan (waiting for which made a very long weekend). But good news. No spread, tho lymph nodes are “bright” (from taking up radioactive glucose—not a surprise).

Yesterday (7 July) port catheter inserted.

From here on, not all certain, but projected stages of treatment.

1.  Chemo (starts Tuesday, 11 July)

Had a port/catheter implanted upper right shoulder yesterday. Stays with me thruout. Initial chemo is every other week for two months, (4 treatments) followed by scan and eval. If tumor shrinking and I’m still upright, the protocol (specific to esophageal cancer) on which this is based says 2 more for total 6 treatments. Goal of this: shrink tumor, scour body for “micro-metastasese” which aren’t visible on scans.

2. Radiation/Chemo

Also new-ish protocol, this chemo mix aims to render cancer cells more susceptible to radiation—enhance radiation effects. Daily for 5 1/2 weeks (I can stay cost-free at the Astra-Zeneca Hope Lodge in Boston. (Char can also spend overnites—tho she’ll be back at teaching by then.) Goal of this section: shrink tumor as much as possible, define and separate it from healthy cells, so surgery can get it all.

3. Surgery

Remove lower portion of esoph, upper portion of stomach, rejoin the two (“gastric pull-up”). Rattner said surgery would/will be endoscopic, except for hole in thorax needed to give access to stomach attachments.

4. Heal.

Ironically, that  thorax incision will take longest to heal, sez Rattner.

One day in IC to test for leakage, then six days or so to transition among food groups (pizza, ice cream, dark chocolate, burritos?), then home. And heal some more.

To close this, a note for the gambling types: After stage 2 (radiation/chemo) 10-15% of patients from this unit exhibit what is called “complete response.” Meaning: tumor and associated cells gone. Split. Disappeared. Scans clear clean through.

10-15%. Not really betting odds, but I’d be eager to help Rattner improve his batting average.

I find I’m hanging on to his words:  “We should have you back on skis this winter.” (Rattner a x-c skier.) A bright sound, when I was preparing for darker words about “extending quality of life” and “palliative care”.

But a long way to go. A half year or more, this journey.

MGH-first team meet

27 June — Tuesday

MGH visit today, Char ’n me met with team for couple hours this afternoon. Cautious good news.

Team:

Dr David Rattner—div chief, GI & gen’l surgery
Dr Jill Allen, chemo/oncologist.
Dr Jenifer Wo, radiation/oncologist.

Expected we’d meet with an intern, then big man would breeze in, say we’re in good hands with young Dr…, then blow out. But so different. Rattner arrived, said: “I’ve seen the paperwork, but tell me, what brings you here, from your perspective?” He proved even better in person than in his online videos, writings. Direct, thorough, asks and listens and attends. With him for 40 minutes or so. For more: click the link below, then click Multimedia and choose the video on the left.

http://www.massgeneral.org/doctors/doctor.aspx?id=16613#

Good news is several things. Rattner mentioned this unit in MGH has done more esophageal resections than any other unit in the northeast. (And number done is significant correlate of good surgery/good outcomes.)

I mentioned my bete noire (maybe from over-research): that because of high morbidity associated with this surgery some meds classify it as an untreatable cancer. Rattner said in my case, no way. His judgment is that, assuming all goes reasonable well, “cure” is possible. He used the word. Said (paraphrase): you’re in good shape—would not have pegged you for 70s. Assuming scans don’t turn up surprise, in your case we should aim for the fences—hit this one out of the park.

Relief. Rattner left, we hugged. Leaking around eyes.

After Rattner, met with Allen and Wo, together, with a student or two. Allen intense—asked questions, laid out pattern of treatment—typing furiously all the time, but eyes on.

The team has worked a lot together—they have a kind of internal protocol: start with Rattner, then Allen and Wo drive process through the pre-op chemo and radiation and scans, then Rattner drives through the surgery, then another two or three I haven’t seen yet work with Rattner thru recovery.

Caution is spot on liver that from CAT scans.  Does not appear worrisome. But identifying (or eliminating) near and distant metastasis is major part of staging the cancer, and assembling treatment patterns.

So—Thursday (29 June) I’m scheduled for a combo MRI/PET scan. (It’s on an experimental protocol, and here’s the irony: as a “subject”, I get paid.) The combo scan can distinguish tissue elements at finer resolution than CAT, enuf to help rule this spot out (hope, hope) and define the tumor as local. There are lymph nodes (and lots of other stuff) at the esophagus/stomach junction (tumor site); ruling out (or in) lymph and other system involvement is another function of the scans, and the caution. In addition, scan results will guide treatment options.

Distal mass

13 June—Tuesday

Today, a second, follow-up EGD (upper endoscopy; or to trip over: Esophagogastroduodenoscopy). Prep and people familiar from the first exploration a month or so ago.

But there the familiarity stopped. Anesthesia was propofol—so I was awake and alert soon after. Alert enough to recognize Kaczanowski’s face was not the easy smile of the earlier session. I don’t think he used the word “cancer.” He said, in effect, this is serious. We’ll be referring you to Mass General. It’ll be a long process.

The two-page report makes fascinating reading, pictures and all. Looks like an entirely different esophagus from the one pictured in the May report. For a scattered moment I wondered if maybe there’d been a mix-up—that this wasn’t my esophagus. But no.

The words in the report are different from the earlier one, too: this time the reflexed view revealed “distal esophageal mass”. And the recommendations include: “Will refer to Onc surgery at MGH.”

So. Onc = oncology = cancer. Biopsies taken, but I have the feeling they’re more for confirmation.

Problem at home: Last day of school for Char is in two days—15 June, Thursday. She’s got a heady, heavy class load for at least two days. She gets through the door and heads to her desk, works until I call supper, then it’s back to work after supper — and so on. It’s been a rough end of semester for her.

I think I sit on the EGD results until, maybe, Friday. Nothing’s going to change them much, anyway, in the meantime.

Shoulder pain

8 May—Monday

Shoulder pain. A week or so, growing worse at night. No position of comfort available, with or without pillow, so sleep hard to come by.

Friday night, Saturday night—and I probably was getting cranky with declining amounts of sleep.

Sunday morning, Char finally says: “Enough, already.” And we’re off to the emergency room to either fix the shoulder or get some sort of substitute.

ER docs attentive, pleasant. Shoulder, huh? We’ll get to the bottom—maybe.  But then labs come back, and there’s an upward shift in concern. Doc says, in effect: “We’re not sure about the shoulder, but your hemoglobin is very low—6, where it ought to be above 13 or so.”

Result: admitted to Southern NH Hospital, eventually three pints of blood. Endoscope planned for Monday, looking for source of blood in the GI tract. And I realize I had also had some black stool the previous ten days or so—maybe longer. About which I was probably too casual.

Saturday and yesterday, a lot of sleeping, in between meals and needle sticks and other bedside busywork. Must have had some deficit to make up.

Today, late afternoon, Dr. Kaczanowski does the scope work, finds a formerly bleeding ulcer at the gastro-esophageal junction. Likely source of blood/bleeding. Tissue a little too tender to support real biopsy.

Report reassuring. Only caution: because could not get useful tissue for biopsy, need to have follow-up EGD month or so.

Some lovely pics of ulcer—but nothing else. Kaszanowski reassuring. Smiles and shoulder pats.

Beginnings

In retrospect, the first signs appeared in MaIne. Summer of 2016. 

Char and I took an actual vacation, including a bike/hike in the far side of Acadia–Schoodic Point.  The better-known Acadia is on Mt Desert Island—Cadillac Mt, the carriage roads, Sand Beach, Jordan Pond, and so on. But to the west, across Frenchman’s Bay, curves a peninsula that holds the small town of Winter Harbor and ends at Schoodic Point. A far less traveled part of the Park, it includes beautifully designed/maintained bike trails, classic northern New England shorelines. The blog image was taken off the Point.

Late August, we found a b&b run by good dog people in Winter Harbor. While we biked and hiked, they groomed Scotty. A perfect late summer afternoon: blue sky, great trails—except for me. Normally on bike rides with Char I’m out front by some—but not this time. On stiff uphill climbs I was huffing to keep up. On the steep uphill to the Schoodic Institute my lungs ached, legs burned, and barely reaching the top I stumbled off the bike, hit the ground.

Whether denial set in or what, I dunno. Funny, yes. Strange—but not enough to follow up.

Five months later, another region, another season: cross-country skiing on lovely new powder snow at Windblown in Rindge—same thing as in Acadia. Char (who’s a fair demon on x-c skis anyway) is out in front, heading uphill—and I’m reduced to bare slipping and sliding. Like Acadia, lungs and legs at their max just to keep up. 

But again, as with Acadia: I brushed it off. Must need more conditioning, ramp up workouts at the Y. Anything other than dis-ease. I’m okay.