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.

two wishes came true

7.29.19 ~ Katherine at Eastern Point Beach

The first wish: to see my granddaughter fall in love with our beach. We went in the evening during a recent overnight visit and she loved it so much we decided to come again the next day. 🙂

7.29.19 ~ Katherine using a cookie cutter to make hearts in the sand

In the evening it can feel like one has the whole beach to oneself.

a bucket full of love!

We got up bright and early the following morning to beat the crowds and the heat of the day.

7.30.19 ~ turns out Finn is a morning person like his Grammy
7.30.19 ~ Katherine is still a night owl, like most of the family,
but she didn’t mind getting up early to go back to the beach
~ Katherine met another early visitor to the beach
and I wondered what they were talking about ~

So after spending some time with both her children on the wet sand near the water, and then nursing Finn, Larisa took off with Katherine to show her all the magic and wonder of this special beach where she grew up. She showed her how to catch hermit crabs, put them in her bucket, and let them go again. And many other things. Grandpa & I tended to Finn, who was fussy and ready for his morning nap.

But first Grandpa wanted to show him a few things, too.

Our little towhead. When I was little I had blond hair, too, and could not get used to people calling me “Blondie” wherever I went. That bothered me for some reason, until my grandmother told me it made me look Norwegian, like my ancestors. As soon as I started liking my blond hair, when I was a teenager, it darkened to a light brown. And that, as my mother would have said, is how the cookie crumbles.

~ I think I need my nap now, Grandpa ~
7.30.19 ~ rocking Finn to sleep on Eastern Point Beach
~ using my body and two hats to keep him in the shade

The second wish: to rock my grandson to sleep one more time. I had been sorely missing all those naps he took in my arms those first months of his life. (Swaying back and forth with my feet in the sand is much easier on the back than rocking on a hard floor was.) He was a day short of 9 months old and quite an armful!!!

My snuggle bug slept for over an hour and Grandpa kept him in the
shade by periodically adjusting the chair and the hats and a towel
~ I treasured every moment of this long nap

When Finn woke up he was in a fabulous mood. The concession stand opened at 11:00 a.m. so we left the sand and headed to Tyler House to enjoy some ice cream on the shady porch. It was very hot and humid but the sea breeze and being out of the sun was just what we all needed.

7.30.19 ~ our darling Larisa and her precious little ones

It was such a wonderful couple of days. And I admit, I did shed a few tears when they left later that afternoon. I hope next time Dima will come, too!

out and about

5.2.19 ~ Mystic, Connecticut ~ sunbathing
5.2.19 ~ Mystic, Connecticut ~ sunbathing mate
5.2.19 ~ Mystic, Connecticut ~ surveying the pond
5.2.19 ~ Mystic, Connecticut ~ so busy eating I never did see its face
5.2.19 ~ Mystic, Connecticut ~ posing
5.2.19 ~ Mystic, Connecticut ~ spring’s beauty!
5.1.19 ~ Chapel Hill, North Carolina ~ Finn and a snake
We have another budding nature lover in the family!

I’ve been under the weather for a few weeks, but yesterday I just had to get out of the house, go for a scenic car ride, and then a walk. Trees are greening! April was the wettest month in Connecticut history so we were grabbing some prime time between rainfalls. Can’t say being out there was any good for the allergies, but it sure lifted my spirits.

4.27.19 ~ Chapel Hill, North Carolina ~ Katherine and primrose in full bloom
~ last two photos by Dima ~

television

Happy Spring!

Work on the stuff in boxes has slowed way down because one box in particular has loads of my work from grammar school. Work that my mother had saved. The trip down memory lane has been surreal… and slow…

The above drawing was with a group of papers created when I was about seven years old. We had to draw things we were thankful for. I drew my house, the American flag, and this television. It made me smile.

Recently I’ve learned that I think in pictures, rather than words or patterns. I had a reputation for being a bookworm, and I do love read, but I do it very slowly and my reading comprehension is not up to par. (I now have my grade school report cards to confirm that.) I find it very interesting that I did not draw a book for this assignment!

I still love watching T.V., although at times I am embarrassed to admit it. Some people can be pretty snooty about how mind-numbing they think most of what is offered is. And it is. But as I was growing up my parents required us to watch nature (think Jacques Cousteau), science and history documentaries. To this day I still watch and enjoy them!

After my mother died I would watch T.V. with my father on Wednesday nights, Nature and Nova on PBS. And Masterpiece Theatre on Sundays. And nowadays you will find me glued to the set when Finding Your Roots, with Henry Louis Gates, Jr. comes on!

One night in October last year, I found an episode of Nature online. I invited Katherine to watch A Squirrel’s Guide to Success with me on my laptop. To my surprise and delight, she was utterly fascinated — we do watch squirrels a lot when we’re outside — and stayed put to watch the whole program with me. 🙂

I will keep reading books, but I’m more gentle with myself now when I have difficulty following along. And in honor of my inner child, I will now be watching T.V. without apology!!!

living a life

image credit: pixabay

Instructions for living a life:
Pay attention.
Be astonished.
Tell about it.

~ Mary Oliver
(Red Bird: Poems)

I’ve posted this poem before and the words came to mind again when I learned of Mary Oliver’s death yesterday. Thank you, dear poet, for teaching us that the instructions for living a life really are that simple. (Another of her poems, my favorite, is shared in my blog’s sidebar.) She loved Provincetown, too, and many of the things she described in her poems were so familiar to me.

Tim & I have been in North Carolina almost a week now, looking after our new grandson, two-and-a-half-month old Finn, who came down with an awful cold while his dad was out of town and his mom had an extra-busy week at work. But he seems much better today so he got to go back to daycare with big sister Katherine. It was fun taking them there and we’re looking forward to picking them up again.

Of course I have caught the cold. But it is worth all the time I was able to soothe the little guy and I will treasure the memory of him sleeping in my arms for hours. And being with Katherine, who is busy monitoring the hatching of a (pretend) stegosaurus egg in a tub in the bathroom. We’re all a bit astonished. What we thought was a foot slowly emerging from the egg turned out to be a jaw! Now the mystery is wondering how big this dinosaur baby (Steggy) will get.

January down here is different than Connecticut. There are already pansies growing in planters along the sidewalks. Don’t see them in Connecticut until April! I saw a pussy willow starting to bloom on our way walking to the community compost pile. And the Carolina wrens are still singing outside my window.

Life is good. May you rest in peace, Mary Oliver.
(10 September 1935 — 17 January 2019)

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!