diagnosis: radiation proctitis

Radiation proctitis (and the related radiation colitis) is inflammation and damage to the lower parts of the colon after exposure to x-rays or other ionizing radiation as a part of radiation therapy.

In January and February of 2018 I had three radiation treatments for endometrial cancer, following a hysterectomy. In July 2018 I began having distressing gastrointestinal symptoms which kept getting worse for the next 18 months. Now that I finally have a diagnosis I decided to create this narrative to keep track of how it all unfolded.

At first I made no connection between my symptoms and the treatment, assuming I had developed the irritable bowel syndrome that seems to run in my family. Dietary changes brought some relief at first but things kept getting worse.

In June of 2019 I described all my symptoms to the radiologist who had treated me but she dismissed my concerns, she said it sounded like irritable bowel syndrome that was made worse by the emotional stress of having cancer. Not anything related to the radiation therapy. I’m still angry about this.

In August of 2019 I saw my oncologist who agreed with the radiologist. Meanwhile I kept eliminating foods from my diet and looked into stress management. No signs of cancer returning but could worrying about the possibility really be causing all this? If I was worried it was definitely subconscious.

Early in November 2019 granddaughter Katherine came to visit us for three wonderful days. We had so much fun with her! But on the last day our visit was cut short when I had a very painful attack of ischemic colitis which landed me in the emergency department, getting all kinds of tests and a shot of morphine. It took me two weeks to recover, although the remaining gastrointestinal symptoms were worse than ever.

Tim spent some time searching for a new gastroenterologist and found an all-female practice. I took a chance and am so pleased with my new doctor and her APRN. They listened to my concerns!

A colonoscopy was scheduled for December 18 and we made it to the clinic driving through an ice storm. When I woke up afterwards the doctor told me my intestines were definitely damaged from the radiation. Physical evidence. Tears of relief ran down my cheeks, not for the news, but for feeling validated. It wasn’t psychosomatic.

On January 3, 2020, on my follow-up appointment with the APRN, I received the official diagnosis, radiation proctosis. I also have radiation colitis on the other side of my pelvis, where the small intestine joins the large intestine. It’s permanent. It’s a relief to know I’m not crazy and my focus is shifting from trying to “cure” my symptoms but now to finding ways to manage and live with them. I’ve started one med which has helped me enough to make a trip to the grocery store possible. (I hadn’t been out of the house, except for medical appointments, for two months!)

Another med the insurance company won’t cover. Still waiting to see what, if any, substitute can be made. The strategy is to reduce the inflammation as much as possible.

My goal is to take a walk in the woods one of these days. And to have supper at the beach with my gull friend this summer.

the force of happiness

5.17.19 ~ bark of dwarf river birch, my garden

Such is the Force of Happiness —
The Least — can lift a ton
Assisted by it’s stimulus —

Who Misery — sustain —
No Sinew can afford —
The Cargo of Themselves —
Too infinite for Consciousness’
Slow capabilities —

~ Emily Dickinson
(The Poems of Emily Dickinson, #889)

5.17.19 ~ new leaves of our dwarf river birch

We planted this tree in our garden in the spring of 2014 and it has brought me so much happiness. Especially in this season, when the leaves come in and start competing with the bark curls for visual interest. When I open my kitchen shades each morning and see more and more green ~ pure joy. In summer it protects the kitchen windows from the harshest afternoon sun.

Yes, happiness is uplifting, and misery weighs us down, too heavy, impossible to carry alone. Grieving a loss is often a slow process, and might last a lifetime.

I count having the company of this tree as one of my many blessings.

getting started

Papa at work in his lab

Finally, after years of eldercare, our own health problems, and helping to welcome our grandchildren into the family, I find myself with actual free time! It feels very strange.

So, I’ve been able to roll up my sleeves and tackle the pile of stuff taking up half of the guest/genealogy room. Three large boxes of stuff have been donated (mostly knick knacks) and a couple of large bags have gone to the dumpster. And I’m starting to find some of the buried treasure. Tim set me up with a scanner so I’m on a roll now!

Grandfather examining refrigerated bottles of ?

These two pictures were taken by my grandmother, probably sometime in the 1960s. It makes me smile to think that my father took his in-laws to work with him one day, probably while my sister and I were at school and my mother was at work. They were very proud of his accomplishments. He was the first in our family to get a PhD. My sister would become the second.

We should be getting some snow tomorrow ~ that would be nice if only the rain wasn’t predicted to come wash it all away.

an ancient, magnetic language

1.31.19 ~ starling tracks and winter shadows on the balcony

Tracks are an ancient, magnetic language — pulling us in with possibility. The elusive poetry of a print, unlike the muscular certainty of a border line inked in an atlas, reveals details of a life being lived. A tracery of passing impressions, tracks can be as delicate as the brushstroke of a bird’s wings, as bold as a hunting fox. They speak a mutable tongue, transforming from the moment they appear before finally vanishing, to be eventually overlaid by another script. But if you happen upon a set of tracks in their brief and fragile time, they can tell you things you never knew. They can take you places you’ve never been, and lend form to a fleeting world.
~ Julian Hoffman
(The Small Heart of Things: Being at Home in a Beckoning World)

1.31.19 ~ 3°F (-16°C)

I’ve been waiting a long time to take a photograph to pair with this lovely quote. At first I imagined gull tracks in the sand at the beach. One day in North Carolina I found deer tracks in the mud on my way to the community compost pile, and then saw a deer enjoying some newly deposited vegetable scraps. No camera on me, though. But this morning we discovered these tracks on the balcony.

Starling tracks, no doubt. Not my favorite bird, but they spend a lot of time on the balcony, walking around, trying to figure out how to get to the woodpecker feeder. After a few hours of sunshine, the tracks and the thin layer of snow have now vanished.

This may be our winter of no snow. It snowed here in November when we were in North Carolina. It snowed in North Carolina in December when we were here in Connecticut. While we’ve had flurries now and then there has been nothing to shovel!

After nursing our terrible colds for more than a week we’re starting to get back to normal. I finally got a good start on the boxes of family history stuff and hope to keep going all winter and spring. Maybe things have settled down enough and I can actually get through this!!!


1.31.19 ~ wondering why for some step paths the feet are closer together

solstice memories

Katherine still loves her penguins

Trying to get used to this new editing page with its blocks and new steps I am having a difficult time… 🙁 But I must adapt to changes no matter how challenging this one is for me. It took me hours to create my last post but I will give it another go.

Today was a very emotional day for me. I took all the decorations off of the solstice tree, the best tree we’ve ever had. It was a Fraser fir. It smelled amazing! Its branches were strong enough to hold the glass bead garland my sister made for me years ago. I had such a good time decorating it with Tim, using all my white, silver and clear glass ornaments. A white skirt resembling snow. A white owl on top and a white fox curled up in the snow underneath it.

Katherine with the snow orb tree behind her

And while I was at it, I sorted through all the decorations I’ve been hoarding over the years and donated at least half of them. It’s funny when I think I’ve made so much progress simplifying my life and I still find object collections that have yet to be minimized. Now I have kept only the ones that truly “spark joy,” as Japanese decluttering author Marie Kondo teaches.

This holiday season was extra special for us. Nate & Shea haven’t been home to celebrate since they moved to Georgia in 2011, and Larisa & Dima were last here for the holidays in 2014. It was interesting how it worked out because we usually have our niece and her teenagers and my sister and her husband here for Christmas day but this year all of them couldn’t make it for one reason or another. We missed them!

It was wonderful having a house full of children again. I will especially remember the brisk winter walks we took. Also the first time Finn smiled at me, his whole face lighting up when he heard my voice, and holding my sleeping snuggle bug for hours… Getting two temporary PJ Masks tatoos from Katherine ~ Owlette is her favorite character from that show. She also introduced me to Puffin Rock, which has to be the most adorable children’s show ever. (It’s Irish but it can be seen on Netflix.) Katherine and I had some special moments together as she talks well enough to tell me about her life. I love listening to her observations. One time she darted down the stairs and exclaimed, “Grammy’s the best!” Talk about melting my heart…

Nate & Shea brought their nephews Julius and Dominic and they were sometimes here, too, when they weren’t visiting other Connecticut relatives, of which they have many! Julius, in his teens now, loved my meatloaf, which forever endeared me to him, and Dominic is so curious and active, he’s 10 after all, and interested in how families are related, cousins and all that. His main objective for this trip was to see snow for the first time. His chance came at 3 o’clock in the morning one day, and he was awakened to see flurries, but not the blizzard we were hoping for.

Dominic and Finn ~ Shea is Dominic’s aunt and Nate is Finn’s uncle. That makes them cousins, sort of, right?

Dominic and Katherine hit it off ~ it was fun to watch them interact and listen to their conversations. Nate, Shea and I took them to a holiday light fantasia which they both enjoyed very much.

One night Shea cooked us a lovely pork dinner, and another night Larisa cooked a chicken pie. Dima saved the day on Christmas when I suddenly realized I hadn’t even thought about dessert! All the stores were closed. He scrounged around in my pantry and was able to make some gluten-free chocolate-chip cookies, using a chocolate bar for the chips. It was great having Dima’s parents join us for that day, too. We all enjoyed the crazy gift basket tradition we have. Instead of exchanging presents we fill baskets with little items and take turns pawing through them to fish out whatever we’d like to take home with us. Some gag gifts, some treasures ~ it’s always fun.

And Nate helped Tim with his honey-do list. My pantry door stays closed now, the bathroom door no longer squeaks, the hole in the kitchen ceiling is patched and the dartboard is hung securely.

It was a wonderful two weeks!

last full moon of summer

8.26.18 ~ full sturgeon moon, Eastern Point

The fourth heat wave of the season begins today. It’s expected to last three days.

So far in 2018, there have been 3 heat waves: the first lasted 7 days… June 29th – July 5th; the second one was only 3 days… July 15th to the 17th; the third one was 5 days in duration… August 5th to the 9th.

Also, a record has been set for longest stretch of consecutive days 80 or higher, for the Hartford Area. The prior record of 36 days from 1939 was well surpassed, with 44 days in a row, from June 28th to August 10th of this year!

~ Mike Cameron
(Eyewitness News, Channel 3 website)

The end of this brutal summer cannot come soon enough for me!

8.26.18 ~ smart laughing gulls return to Eastern Point Beach

Last night we went down to the beach to see the full moon. Even the sea breeze was humid! But on the bright side we saw a few laughing gulls, who have learned to ignore the gull repellent system, hanging out in the parking lot!!!

learning is spiral

8.21.18 ~ garden flowers from our local farmers market

For many, learning is spiral, where important themes are visited again and again throughout life, each time at a deeper, more penetrating level.
~ Jerold W. Aps
(Teaching from the Heart)

For much of this summer I’ve been down in the dumps, cursing the oppressive humidity and climate change. After reading my complaining post on August 9, my kind neighbor invited me out to happy hour at Harbour House Restaurant & Bar in Mystic. I was apprehensive because bars often terrify me ~ too much noise and too many people. But I decided to go and give it a try.

We went at 3:30, before the crowds, and chose to sit outside on the deck, under the dappled shade of a gorgeous birch tree. The restaurant sits high on a hill overlooking “the best ocean view in Mystic.” There was a lovely sea breeze which made the humidity surprisingly bearable. I had a frozen lemonade and some chicken wings and celery. Delicious! It really hit the spot.

And then we were treated to a breathtaking sight. An eagle flew directly overhead with a large fish in his talons. We had a nice conversation with the young couple at the next table. I’m so glad I went ~ thank you, Susan! It was an afternoon I won’t soon forget. Sometimes the squeaky wheel does get the grease.

For me, learning is a spiral. Last summer I decided that leaving any one kind of food out of one’s diet was too extreme. After a year of eating meat, grains and legumes — everything and anything gluten-free — I was getting terrible stomach aches more and more often. Finally one night I had one that lasted for twelve hours, after a meal of gluten-free pasta, beans, goat cheese and veggies. My body was trying to tell me something. I decided to pay attention.

Over the years I’ve tried most of the diets from paleo to vegan and the one that made me feel the best was paleo. So, in the middle of July, after another flurry of research, I decided to listen to my body and go back to the paleo, eliminating beans and grains, even gluten-free grains. An “important theme” that I needed to “visit again.” It’s been about a month and I am feeling better. No more heartburn. My stomach has settled down and one of the things I remembered from the last time eating paleo has returned: I can go much longer between meals without my blood sugar dropping.

Now that Tim is retired it’s been fun trying new recipes with him, going to farmers markets and shopping together. We’re eating lots more vegetables. Tonight I went 5 hours between lunch and supper, and felt hungry but not desperate. What a blessing!

It turns out Larisa & Dima and Katherine will be moving back to North Carolina in September, which means we won’t be going to Ireland for the arrival of our new grandson. Our frequent trips to North Carolina will begin again. 🙂

reflection

“Reflection” by Odilon Redon

So, I was walking at the beach last night when there I spotted my gull friend with the mangled leg sitting on a post, one of the posts he used to sit on while Tim & I were eating. !!! After chatting with him for a minute I took out my cell phone. But, my cell phone skills are limited and it was set for taking a selfie and I was at a loss for how to change the setting. Grrrrr… The gull looked puzzled by my not eating and not having the regular camera. He might even have been wondering where Tim was. Then he flew off. Sigh…

I always had the feeling he was a bit smarter than most of the other gulls. He must be learning to ignore the fake gull alarm noise. So when I was finished with my walk I sat down and figured out how to switch the selfie setting on and off. I will refresh my memory before I start my walk tonight. I hope I get to see him again.

It’s feeling very good to be walking again. Surgery and radiation interrupted my morning walks but it’s kind of nice now having a fresh perspective and a different routine, evening walks. My body feels so different now. Much better. Even the things I reflect on while walking are a little different.

Last night I had a new thought to add to my tired story of having too much stuff to sort through from the ancestors. Tim’s father and my mother died before their parents (our grandparents). All this stuff would have gone to them! Our parents never had the chance to go through their parents’ things. Realizing this makes me forgive myself a little more for being so overwhelmed for so long.

Wonder what new perspectives might come to me tonight. 🙂

 

comfort

7.13.18 ~ Groton, Connecticut

Sometimes I think it must have been much easier to live and die at the time of our ancestors, the Vikings.

When they buried their relatives, they also buried many objects together with the body. This was to be sure that the dead would not miss anything in their new environment. It was also an assurance for the family members who remained that they would not become obsessed with spirits of the dead and constantly be reminded of them because their possessions were still scattered all over the tent or mud hut. Very clever.

~ Margareta Magnusson
(The Gentle Art of Swedish Death Cleaning: How to Free Yourself & Your Family from a Lifetime of Clutter)

7.13.18 ~ Eastern Point ~ my camera decided to go Impressionistic for this distant cormorant

You might guess from my recent choice of reading material that I’m still struggling with the objects and possessions I inherited from our ancestors. Things started piling up around 2008. Hard to believe it’s been 10 years! I have managed to dispose of a lot of stuff but cannot rest on my laurels. What’s left is stacked halfway to the ceiling in a corner of what is supposed to be the genealogy/guest room. The corner takes up almost half the room.

7.13.18 ~ Eastern Point ~ there are three cormorants in this picture, which I didn’t realize until I saw the picture enlarged on the laptop

Trouble is, life (births, illnesses, travels, weddings, visitors, deaths) keeps happening and I need a good chunk of uninterrupted time to roll up my sleeves and dig in. Now that there is a lull in the stream of summer activities I am annoyed by the droning of the air conditioners. But I since learning about the autism I am aware now that I am much more sensitive to noise than neurotypical people, so, I will wait patiently for some cool, dry, quiet weather to return.

7.12.18 ~ Grandmother Elm ~ Stonington, Connecticut

We enjoy going to estate sales. We rarely buy anything but a few days ago we found a large file cabinet in excellent shape at a great price. It is now in the genealogy/guest room waiting for me to make use of it. After my grandmother died my grandfather offered us anything we wanted in the house. I chose my grandmother’s mahogany secretary which I still have and treasure. Grandfather said he didn’t want us grandchildren to be burdened with all the stuff. I don’t want my children to be burdened either.

7.12.18 ~ Grandmother Elm ~ Stonington, Connecticut

I’m also sad about the changes at my beloved beach. The city has installed a gull repellent system. Every three minutes a recording of a gull in distress blares out from the loudspeakers. There are maybe two or three fearless gulls left on the roof of the beach house. All the laughing gulls are gone, all the different kinds of gulls are gone. I suppose I will never see my friend with the mangled foot again. It’s all too much for me to bear and I’ve been reduced to tears more than once this summer.

7.12.18 ~ Grandmother Elm ~ Stonington, Connecticut

I visited my elm tree, Grandmother Elm. I cannot believe it’s been 5 years since I have gone! I used to visit all the time when Tim’s brother was living with us, the year he died here of cancer. Now she has small stems and branches growing out at the base of her trunk, covered with leaves. When I read The Hidden Life of Trees by Peter Wohlleben I believe he said this was a sign of distress. No other tree in the cemetery was like this. Perhaps she is suffering, too. Still, her wordless wisdom comforted me.

7.12.18 ~ Grandmother Elm ~ Stonington, Connecticut