?`s and ANNEswers

Ten minutes to write. Less time to read.

Every Little Thing

The thing about cancer is that if you’re not careful it colors everything else in your life.

For instance, radiation requires that you stay close to home, since you go to the hospital every day of the work week. Consequently your schedule revolves around that appointment. It impacts your standing date at the hair salon, your plans to meet friends for a movie, or whether you can go into Chicago for the day. (You can’t.)

But it’s more insidious than that. I find a rash on my neck, and I wonder, “Is it because of the radiation?” My mouth has been extremely sore these past few days. Was it because I burned it with scalding tea followed by super-hot soup? Or is it some side effect? My knees don’t work as well as they did several months ago?  Is it the next body part to require medical attention as I age? Or is the radiation dose too strong?

You suddenly see cancer everywhere. Advertisements for cancer drugs jump out at you from magazines and TV. Articles about the different types of cancer and their therapies are in every newspaper. And you learn of friends who either have had cancer in the past or are going through what you’re going through now.

It’s important to find activities that don’t remind you of the elephant in the room. For me, they include playing piano and reading material that doesn’t contain ads. The nice thing about these two activities is that they can be done whenever the mood strikes. Except, of course, at 3:30 PM, my daily appointment time.

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Doc Day #4

Yesterday we met with the doctor, and I came prepared with my weekly question.

“What happens when the radiation sessions are done?”

When I had ovarian cancer eight years ago, I needed a blood test every three months for two years after surgery; then every six months for another three years after that. So I wondered what the post-radiation process was.

Thankfully, it doesn’t involve needles. There is a visit with the doctor two weeks after the sessions end; another ten weeks after; and – if all looks good – we don’t meet again for a year. It seems easy enough.

But, knowing how the medical profession works, I’m sure there’s something I haven’t been told. Like “Your hair turns permanently green, so create your wardrobe accordingly.” Or “We didn’t mention that radiation causes you to glow in the dark.” Believe me, either of those side effects are better than needles for me!

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Today was the midpoint of my radiation sessions, so I brought cookies for the staff.  I won’t say it’s all downhill from here, but it felt good to reach the half-way mark and still have minimal side effects.

I’ve thought about these past weeks and tried to determine what I did, consciously or unconsciously, that has contributed to my well-being. Some factors are based on my age. I’m retired, so don’t have to worry about job performance. My children are long gone from the home; so I’m not responsible for checking homework, braiding hair, or playing chauffeur. And I’m not doing this alone. Earl has been there every step of the way.

Additionally, I put thought into reducing my activities, consolidating others, and letting some go altogether. For instance, I made a lot of meals and froze them before starting radiation, because making grocery lists, purchasing the items, cleaning and storing them, and then fixing meals is both time consuming and energy consuming. I also hired a personal chef to make meals in her kitchen to supplement the ones I made in mine.

I devised a schedule based on when I had to be at the hospital and planned my other errands around it. On Thursdays, as an example, I stay home all morning and early afternoon; then head to my physical trainer who is less than a mile from my house. From there I go to radiation and run errands after that if needed. This means I have a good block of time each day to do things that feed my soul. Like playing piano, writing, reading, and just relaxing.

With reluctance, I closed my fledgling publishing company and am donating the leftover inventory to less privileged children in the county where I live.

I don’t know how a single mother who needs to work would do it. But if I had one suggestion, I’d say, “Simplify.” Buy healthy frozen meals for your family; skip your children’s school activities where you could be exposed to some mean germ. And enlist friends to help.

It’s just for a few weeks, and it makes all the difference.

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Research Project

Those of us who come for radiation daily receive a parking permit, so we can park in assigned spaces for patients near the special entrance to the department. There are six designated spaces.

A week ago, they were all filled, which struck me as odd; because I know there is rarely six patients at one time in the department. It also meant I had to drive around looking for a non-designated spot. I’m able bodied, so it wasn’t really a big deal.

But it was. I’ve seen patients in the department on oxygen, on walkers, and in wheelchairs. It’s reasonable for them to need parking near the entrance. And it’s reasonable for the spaces to be available.

For fun, last week I checked to see if the cars in all the spaces had the requisite permit. Only one did. I filed this away and decided to check the next day. When the same thing happened, I told the woman who staffs the sign-in desk in the department. “We have this problem all the time,” she said. “We call Security, but nothing gets done.”

Then and there I became a parking vigilante, seeking justice against rudeness, thoughtlessness, and laziness. J, the lady who staffs the sign-in desk, made me a calendar; and now I give her a report every day I come. Today, for instance, all six spaces were filled and only one had a permit.

By the end of February, when my treatments are over, there could be enough data for Security to become more pro-active. Because if I ever have to return to radiation oncology in the future, I’d like a parking space.

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Super Bowl

Super Bowl Sunday is upon us. Originally we planned to host some Chicago friends in our home for the game. But weather dictated otherwise. So Earl and I shall be watching LII by ourselves and probably won’t give it one hundred percent of our attention. We can do a jigsaw puzzle, laundry, or even paperwork while the spectacle is going on, mostly because we are not invested in the outcome.

Investment in an outcome is really important if you ask me. If your team is in the Super Bowl, you’re all over it. If your favorite tennis player is Roger Federer, you’ve been thrilled lately. Same with those 2016 Cubs and the World Series that broke the Billy goat’s curse.

Investment in one’s health is equally important. In 2004, Earl and I remodeled our two full bathrooms at the same time. It meant we needed to join a facility where we could shower for eight weeks to avoid social ostracization. In the end, I stayed a member and met a wonderful group of friends who are my support today.

Maybe that’s a secret key to investment. One becomes attached, whether it’s a local team or a favorite sport person. Or even local friends. We are not watching the Super Bowl together tonight, but I can tell you my friends all belong on that top team.

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The noun “casualties” often refers to people killed in a war or seriously affected by some extraneous situation. Cancer is certainly in the latter category, especially if one dies from it.

I am not in that position, but I still think of some of the casualties of my diagnosis. With due respect to dictionaries, I’d like to broaden the definition.

A casualty is a deep personal loss. For me, losing almost seven months of my regular life to dealing with breast cancer is a casualty.  At 73, I have more years behind me than ahead; and I want to live every day of them how I want and not governed by some medical situation.

Some would say I’m silly, since I’ve had wonderful care and seem to be on top of this round of cancer. I couldn’t agree more, but it’s still taken precious time away. I haven’t gone swimming since this all started; that’s a casualty. I haven’t spent many days where my cancer routine wasn’t front and center; that’s a casualty. And I haven’t even started on the five-year effort to become “cancer-free.”

I have cancelled trips, reduced my activities, and hired others to do things I normally did with little effort. I have a personal chef to supplement what’s in my freezer, a cleaning lady who means more to me than ever, a husband who is chief dishwasher and launderer, and friends who spur me to keep going.

If this blog sounds grumpy, it isn’t meant to be. Rather, it’s meant to note that even those of us who are flourishing with our cancer treatments still feel deep personal losses in many ways. If you’re one of us, nod your head. It’s okay to feel this way.

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To Winter or Not to Winter

I’m taking a break from my usual cancer-related blog to write about winter. It is Groundhog Day, after all.  I’ve heard Punxsutawney Phil saw his shadow, but some lesser known savant named Staten Island Chuck in New York did not see his. Where I live, it would be impossible to see one’s shadow in the constant grey that is winter’s companion. So perhaps it’s all a function of sunlight and not animal instinct.

That said, Groundhog Day prompted me to Google® what other famous authors (Okay, so I’m not famous; but I am an author.) had to say about this particular season. I offer some pearls before groundhog enthusiasts.

Anton Chekhov, that chilly Russian writer, said: “People don’t notice whether it’s winter or summer when they’re happy.” I wonder if there is any empirical data to support this.

Albert Camus, not to be outdone, said: “In the depth of winter I finally learned that there was in me an invincible summer.” I wonder if Camus was happy. Robert Frost noted: “You can’t get too much winter in the winter.” What do you expect with a name like Frost?

And when William Shakespeare said, “Now is the winter of our discontent,” he might have had Earl in mind. Earl hates winter and wishes his wife were amenable to spending it in Florida. He would likely agree with Bill Veeck who said, “There are only two seasons – winter and baseball.”

Pitchers and catchers report for Spring training around Valentine’s Day; and Earl’s mood will lift noticeably. Mine will too, but it has nothing to do with winter and everything to do with being closer to the end than to the beginning of my radiation treatments.

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Jigsaw Puzzles

Earl and I love jigsaw puzzles, but we put them together only once and then try to find a new enthusiast and hand them off. We particularly like scenes of Americana, 500 pieces, large. But we’re not above buying cutesy, 500 pieces, small, if the price is right.

One of the first things we noticed at the radiation oncology department was the table in the window that had jigsaw puzzle pieces spread over it and the frame already put together.  It was a Christmas tree scene, which seemed appropriate for December. We were there for a preliminary meeting with the doctor.

When I finally started radiation the middle of January, the puzzle had changed to something more woodsy. After a week of two, another puzzle showed up. That’s when I asked, “How do you get your puzzles?”

“People donate them,” came the answer. And the collection that was growing in our closet at home seemed ripe for a new home.  The next day, I came in with half a dozen puzzles of all sizes and shapes. It was cathartic and added an extra layer of interest to coming to radiation five days a week.

Yesterday, when I showed up one of our puzzles was front and center on the table. Truth be told, it was the hardest one too. I never liked it, but I sat down and put two pieces in before being called.

What is it about jigsaw puzzles that is soothing? Maybe the total concentration some take. Maybe the intensity with which some people study innies and outies. Or maybe – just maybe – it’s about emptying one’s mind of the significance of pending tasks. No matter, they are yoga without the mat.

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Music As Medicine

I try to play piano daily, preferably first thing in the morning before my brain is cluttered with remembering what else I need to do today. And since last fall, when cancer became an ongoing issue, it’s been especially soothing to pound the keys.

While I recuperated from surgery I played a piece by the Russian composer, Alexander Borodin. Called “The Dance of the Polovetsian Maidens,” the music is loud – very loud — repetitive, and challenging. Both my piano teacher and I agreed it was the perfect piece to express any unconscious feelings I had about the situation.

Over the holidays and during physical therapy to regain full mobility of my right arm (which was essential to starting radiation), I played traditional carols, studied the scales and chords in various keys, and worked on an easy arrangement of “Ode to Joy.” None of it was about being angry.

Now, two weeks in to radiation, I’m working on “Hallelujah!” It’s not the one written by Handel and often sung at the holidays. Instead, it’s the one by Leonard Cohen that was made famous by Jeff Buckley and was sung on American Idol a gazillion times. I’ve always loved the song and found an interesting arrangement that starts in the key of C and moves through the theme and variations into the key of A flat Major.

Originally this choice of music was no reflection on how I planned to feel when my radiation sessions – 21 to go as of today – were over. On second thought, however, it’s the perfect piece to work on.

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Doc Day, #3

Every Tuesday after radiation Earl and I meet with the radiation oncologist. He examines my skin for potential redness and soreness and asks if we have questions. We usually do.

And he has answers. In fact, Dr. G is very generous with his answers and his time. In my experience, this is unusual, and both Earl and I appreciate it. He has a sense of humor too.

One of my questions today revolved around the use of sunscreen to avoid the side effects of radiation. Turns out it won’t work. But if I plan to do any topless bathing, once radiation is over, I should definitely use it liberally. Another question was about the area on my body that is being radiated. I thought it was the size of a six-inch ruler; turns out it’s more like a large washcloth. From the doctor’s point of view, this is the typical standard of treatment for breast cancer; for me it was a revelation.

It’s easy for a patient to misunderstand what a doctor thinks is perfectly clear. At least, when I have questions I can look forward to Doc Day to get them resolved.

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