Self Talk

About a year ago, I started training seriously at a gym. I had tried other places in the past, including LiveStrong through the YMCA, a very good place to start if you have the credentials (cancer patient/survivor, sorry to those who aren’t in the club). I’d been reading and podcasting a bunch about such things, and thanks in part to my brother, I came across a compelling case for weight training. Co-incidentally, my medical oncologist pointed out that the Tamoxifen she had me taking to prevent subsequent cancer (don’t get me started!) would also attack muscle mass, and that I’d better do some weight bearing exercise as an intervention. Grump!

Off I went to a very scary-looking gym that now makes me feel quite the thing, thank you. After a few weeks of hard work, my brother shared with me some of the things he and a buddy tell themselves as they work out. One was “This set makes me stronger.” That was useful a year ago and now again as I return to strength training. By the way, the new drug I’m on to prevent cancer causes osteopenia (bone density problems, prone to fractures). There are two fixes for it, the first is (drumroll): weight bearing exercise. Grump!

Right now, I find myself saying “all the sets make me stronger” because, well, I’ve lost a lot. I’ve been burned inside and out and cut up stem to stern. But yesterday, the assignment was three sets of inclined dumbbell bench presses. I started with 10 pound dumbbells, down from PR of 25 pounds but up from the five pounds my first day back. This day, I bumped up set two to 12.5 pounds and the third strength building set to 15 pounds. Grunt!

Trying to maintain training through surgery and chemo ultimately became futile, but it was the last thing that I took off my plate for the sake of treatment and recovery. It was the first thing back on the plate from the all clear. It sounded like a good idea at the time. For so many reasons. The reality is so much more challenging and difficult than sitting back playing Zelda. I also feel so much better for it. I can do hard things.

Would it be OK if the gym went back to being the hardest thing I do in a week? At least for a while.

The Two Best Days at Radiation

Both had to do with other patients and care givers.

When my daughter was home, she drove me to radiation. That automatically made those days better than all other days. One day we had an unusually long wait for my turn. That happens sometimes when another patient has a particularly awful treatment plan that takes a wrecking ball to the department’s schedule. Lord, have mercy on They Who Endure. Anyway, she had noticed a stash of children’s books on the fireplace that was never lit maybe because it was summer. Included among them was a Winnie The Pooh. She proceeded to read it aloud to me and by extension the other patients around us. The lady across from me also hung on every word, smiling all the while because it was “a sustaining book such as might help and comfort a stout bear in great tightness” (apologies to A. A. Milne, this is how I remember the quote, not fact checked by anyone). All of us were indeed sustained and comforted. Perhaps I’ll tell you about the other best day another time.

Things I Wish I Didn’t Know About Cancer, Part 1

Written in 2018, between the cancers.

How it grows

How long it hides

Who places the best IV lines

The number of decisions necessary to pursue treatment

All the side effects and consequences of treatment

What hormone gutting does

All the doctors and supporting medical staff

How much it takes (and it takes and it takes and it takes)

Grief

Ways to prop up a phone for video streaming

Plastic surgery

Any surgery

How long it takes to recover

Words like genomics and oncotype

Words You Might Hear on a Cancer Journey or Rather, Hope To!

Installment 2: a bit of aftermath

Suggested accompanying sound track: I Will Survive by Gloria Gaynor

Remission or Cancer Free

I have not heard the word remission with regards to breast cancer. I hear it more with leukemia and other types of cancer. I have been told that I am cancer free. Twice. Hm. It carried more joy the first time. Being the second in the same body part, my skepticism is strong, maybe justified. My son, statistics-minded as he is, on hearing my dismay about my numbers/odds (not really justified because my numbers are objectively good, but feelings have no IQ) reminded me that all these things are “independent variables.” My limbic system isn’t buying it. Yet.

Survivorship

Another word I’ve heard twice now. Curiously, as long as we aren’t dead, aren’t we all survivors? It seems a very low bar with a wide range of conditions. From just hanging on by a thread or a tube, beyond suffering–morphine, to fullness of life (think: building a business, writing books, serving the community, making beautiful art, nurturing one’s family). So it is a weak word packed with powerful baggage. If survival is the goal, quality of life takes a back seat. Continuing to breathe is necessary, but who can sustain that as the only goal? Surviving leaves little room for what comes next. It does mean that one has endured very hard circumstances, not dead yet. This is good.

As for cancer, I will be surviving* for at minimum the next ten years, or until I don’t. There will be regular check up appointments, daily pills that go after every molecule of estrogen in my body, future surgery (who knew silicone implants have a shelf life?), and wondering if what they’ve told me is true; today I am cancer free. Sort of. I am not free from treating cancer. I am not free from surviving. I am not “free to go.”

*Note: I will do better than survive. I train at a gym (Power Strength Training Systems) where my favorite workout is called Thrive. Bless them richly for that title. Active cancer treatment has meant earning my survival. Now it’s time to move on to thrival.

Words You Might Hear on a Cancer Journey

Let it be noted that oncologists and their friends often use words in unusual, unfamiliar, mysterious ways unknown to the general population. “Words you might hear” will stand in as an etymological broadening of such words.

Installment 1: Radiation

Simulation

Before radiation begins, there is a planning session called a simulation. No actual radiation is delivered at this time. In fact, the patient isn’t even in the actual room where radiation will be delivered. During the simulation, a cradle is created and tattoo markings are placed (see below), and the patient gets a tour of the facility. In my case, I also received a swag bag to bring every day containing a white robe (see pictorial tour) that I embellished subsequently.

First day of treatment

It isn’t really! They bring you in for another run-through (like a simulation in normal people language) to verify the setup from the simulation. I quickly re-named it the “dress rehearsal.” The bummer about this word use is that the course of treatment is specific, in my case, 30 treatments total. So the first day of treatment doesn’t count! Rude!

Cradle

A cradle is used during radiation. Sounds soft and cuddly, and that would be wrong. This cradle is custom molded to the patient’s body to bolster arms and maintain the posture/position required to deliver the appropriate dose of radiation to the desired body part. They are reusable and fairly nifty. You can see an example in the photo from the pictorial tour of radiation. Mine would be at the head of the treatment table nearest the stand mixer. The cradle has markings on the outside edges used to align it with the radiation machine.

Tattoos

These are not beautiful artwork tattoos, but rather registration marks. No choice of colors, they’re all black. They are placed by a radiology tech after determining latitude, longitude, and flatish, stable spots that are unlikely to change from day to day. Three freckle-like tattoos go on, one on each rib cage and one dead center sternum. For the record, these remain the only tattoos I have, and were acquired under protest. They are placed with a pre-filled ink reservoir with a needle. Disposable. These three dots line up with the marks on the cradle and the lasers in the walls and ceiling of the actual treatment room (very sci-fi).  All of that ensures that the radiation beam targets exactly the same bits each day, because bodies are mushy and weird.

Bolus

I thought I knew this word, but it has more meanings than I previously understood. In context, this bolus is a bit of material used to mimic skin during radiation treatment sessions. The bolus could be a gelatinous mat, similar to a reusable ice pack, room temperature. Or, as in my case, another custom-made, form-fitting bit of plastic, not reusable. Think: breastplate of righteousness and you’re on the right track. My dosimetrist preferred it because the soft one was not adhering to the skin as reliably as she wanted. Those pockets of air can burn the skin more and affect the ultimate dose. Either way, in the radiation suite, a bolus is neither swallowed nor pushed, let alone passed.

Dosimetrist

The most bizarre word, made of Greek parts with who-knows-what combining form! This word does not appear in etymology online. Help me out, Scripps Spelling Bee kids! A dosimetrist is in charge of monitoring the dose of radiation and its delivery. Like a pharmacist. She’s wicked smart because physics.  In any case, the word stuck out so I thought I’d share.

Photons

I know this word from my one and only physics class in college, which I enjoyed a good deal. Also from The Great Courses on the Higgs-Boson. My take away is as follows: particle, particle, photon, particle, field, wave, particle particle. At Lemmen Holton, radiation is delivered in a few ways. My dose came from photon radiation. Not electron, not proton. And now we have arrived at the end of my comprehension.

Less Shallow

A synonym for “less shallow” would be …. About half of my radiation treatments were less shallow. They want to radiate some skin, as cancer can recur in skin. Gotta burn that, Baby! Some lung tissue is also at risk. In pursuit of the less shallow dose, the radiation does not penetrate deeper, as the phrase suggests, but the shallower bits are not. Clearly there is wizardly magic that continues to elude me.

Because I Can Do Hard Things

Tomorrow will be my first gym day after active cancer treatment. I’ve spent the entire summer in flip-flops (no real hardship there!) because of chemo. I had mild neuropathy, a predictable side effect of chemo that made shoes painful to wear. But the gym requires shoes, not flip-flops. Obviously. So today is a pedicure day so the toenails will be in good shape for weight bearing exercise.

Meanwhile, my bone density scan last week has revealed osteopenia, also a cancer thing, that will get worse as I start on anti-hormone therapy going forward. I will add calcium to the pillboxes multiplying around the house.

Goals for tomorrow are modest but real:

  1. Show up.
  2. Complete the warmup.

Bonus points if I don’t cry.

Healing points if I do.

Update: Bonus points were awarded.

Radiation, Pictorial Tour

Lockers to the right, changing rooms to the left

Scheduling radiation is a trip. I chose a block of time (noon-3:00) for my usual radiation set. Each day I am given a time within that window for the next day's session. Printed on that half sheet of paper is any other appointment attached to radiation, eg: oncologist visit. I present the paper to the radiation tech who signs off or passes me off to the next agenda item. At the conclusion of the set, I trade in that day's agenda for the next day's agenda. Hence, my dance card.
I embroidered my robe. It became a conversation starter. I don’t know why I got one, but it was nice.

About scheduling. I chose a block of time (noon-3:00) for my usual radiation set. Each day I was given a time within that window for the next day’s session. Printed on that half sheet of paper is any other appointment attached to radiation, eg: oncologist consultation. I present the paper to the radiation therapist who either signs off or escorts me to the next agenda item. At the conclusion of business, I exchange that day’s agenda for the next day’s appointment. Hence, my dance card.

Wait here.

There is coffee available, but usually there is not enough wait time to bother with it. Across the corridor from the fireplace is one of four treatment suites. The bit you can see in this photo is where the techs manage what happens during radiation. They schedule patients in 15-minute blocks, meaning way too many people being treated for cancer. Everything from brain stem to bone marrow transplants, and me. They even have a way to radiate blood for transfusions so that recipients do not acquire infections from donors.

My main tech people told me (because I asked) that the mechanism that triggers this release is overly sensitive, and when it triggers, the entire department shuts down for the remainder of the day. It happens enough that my providers have experienced it. Inergen is a chemical that sucks all the oxygen out of the space.

Star Trek treatment room

As soon as I turned the corner from the alarm sign, this is what I saw. Where I’m standing there is a chair and side table to disrobe. There are lasers in the walls and ceiling that line up with the cradle* and the tattoos* on my sternum and either side of the rib cage. The table adjusts height and rotates on horizontal plane. A tech would place a bolus,* then everyone but me left the room. The only sounds are mechanical; this machine breathes as it goes about its business. There are lead “leaves” inside that adjust to shape the treatment area.

Stand Mixer

The machine also rotates as if the digital screen you see were the axis point. for 25 of the 30 treatments, I received 4 zappings, 2 energies from my left side repeated on the right side. The machine also takes x-rays every 5 treatments or so to check for any changes in the anatomy (Did I sign up for that?). I’d read Radium Girls about a year ago, not such a pretty picture! This monster has attachments too. More on that in another post. There is no radioactive material in this machine. The radiation is generated on demand electronically. A dosimetrist* monitors the photons* and the bolus* and there is math involved in magical ways that I heard but can neither reproduce or comprehend.

For our purposes here, nothing in this daily process is inherently painful. As the burns (which are cumulative) got more intense, positioning my arms above my head became uncomfortable, as skin does when it is burned and scars harden.

Words noted with an asterisk (*) will appear in a subsequent post.

All that Glitters is not Gold

Sometimes it’s silver. At the end of radiation is a beautiful, blue pot of Silver Sulfadiazine Cream, USP 1%. It is the gift of cancer leprechaun. As gold is to rainbows, and triamcinolone is to chemo, so is silver to radiation. It even shimmers in the pot. And oh, the relief!

Last Day of Radiation

In the Manner of “Good Night, Moon”

Goodbye dance card, goodbye check in.

Goodbye locker, goodbye gown. Goodbye hallway cavernous and long. Goodbye fireplace never lit.

Goodbye happy techs, goodbye signs. Goodbye stand mixer, attachments and tin.

Goodbye lasers, goodbye cabinets.

Goodbye bolus, cradle, and table.

Goodbye Dr. Kastner, goodbye Paula.

Goodbye Janice.

Thank you for taking care of me.

I don’t believe I shall miss you.

He Shall Feed His Flock

There is a baby grand piano in the lobby of Lemmen Holton Cancer Pavilion that resounds up six floors worth of cancer related offices and treatment suites. I’ve been treated on all but one of them. Usually, the automated player piano software drives the music. Unobjectionable except when it plays Sondheim (good) Send in the Clowns (seriously NOT good). But I can always, as in 100% accuracy over the last several months, tell when a real human being is playing instead of the pre-programed stuff.

Today, my favorite piano volunteer was playing a gorgeous arrangement of one of my favorite arias from Handel’s Messiah. City Chapel this fall is reading Isaiah together, the source material for this aria. “He shall feed His flock, like a shepherd. And he shall gather the lambs with his arm, and carry them in His bosom. And gently lead those that are with young.” You can look up the precise reference yourself. The

alto that sings it is rich, luscious, and the soprano soars over top of it with great hope and comfort. I’ve had a tender spot for it since cradling my baby son.

Tomorrow is treatment #30 of 30. Silver nitrate is already in my radiation kit bag.

Today, all this is difficult to bear.