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.

ethnicity estimates

Barbara’s latest ethnicity estimate from Ancestry DNA

Eastern Europe & Russia 43%
England, Wales & Northwestern Europe 28%
Germanic Europe 20%
Ireland & Scotland 3%
Baltics 3%
Norway 2%
Italy 1%

We recently added more ethnicity populations and communities. Based on this update, you might see changes to your results.
~ Ancestry.com

Tim’s latest ethnicity estimate from Ancestry DNA

England, Wales & Northwestern Europe 71%
Ireland & Scotland 21%
Germanic Europe 6%
Norway 2%

The last time we examined our DNA results was in 2014, about 5 years ago. (penetrating the past) We both have some interesting changes in our results!

For me, the Italian connection all but disappeared, which seems about right because I could never find one on the paper trail. Norway shows up solidly in about the right amount for my 3rd-great-grandfather, and Ireland as well, for his wife, my 3rd-great-grandmother. My father’s Slavic (Ukrainian) origins gained a larger percentage in my DNA. I’m intrigued with a new category, 3% Baltics (Estonia, Latvia, and Lithuania).

Interestingly, Tim also seems to be 2% Norway. But he’s a whopping 92% England, Wales, Scotland, Ireland and Northwestern Europe. And this analysis turns up absolutley no European Jewish ancestry, in spite of having a Jewish maternal grandfather. Still a mystery.

So, on Christmas Eve, we were sitting around our table working on a jigsaw puzzle and listening to holiday music with my sister and brother-in-law. I had made the shuffling playlist for my iPod years ago and had included tunes from many traditions. When the Dreidel Song came on my sister asked Tim if his family had celebrated Hanukkah when he was a child. The answer was no, although his stepgrandmother often brought Jewish foods to the house during the holidays. And then, much to my astonishment, he mentioned that his maternal grandfather had converted to Judaism. What!?!

This definitely would explain the lack of European Jewish ancestry for Tim!

It never ceases to amaze me how memories are stirred up in the oddest ways. And how a non-genealogical question lead to a spontaneous answer containing an important clue, which led to the solving of a genetic conundrum.

It will be fun to see any future changes in our DNA analyses as the scientists fine-tune the estimates as their population samples continue to grow.

Dea. John Kyle from Lochgilphead, Scotland

10.23.19 ~ Tim and Aunt Delorma behind the gravestones of their ancestors,
John & Mary Kyle ~ Old Cemetery on the Plains, Windham, New Hampshire

Another one of Tim’s grandmother’s lines goes back to Scotland. A perfect excuse to spend a lovely autumn afternoon with Tim’s aunt in New Hampshire, locating the gravestones of their ancestors, while enjoying the gorgeous fall colors en route.

Allegra Estelle Hamilton 1900-1992
Gertrude Mabel “Gertie” Hubbard 1874-1965
Delorma Brown “DB” Hubbard 1842-1915
Lydia P. Randolph 1807-1901
Jane Koyl 1779-1870
Ephraim Koyl 1753-1838
Dea. John Kyle c. 1722-1769
Dea. John Kyle c. 1682-1762

10.23.19 ~ John & Mary Kyle, Scottish immigrants

Fortunately the Find A Grave website provided some older and much clearer photographs of these tombstones and I was able to identify them by matching up the markings that could be made out. And thankfully, the original epitaphs were recorded there, as well.

HERE LYES THE BODY OF
MR. JOHN KYLE HE DIED
MAY 12th 1762 AGED 80
YEARS

Here lies the
Body of Mrs.
Mary Kyle, Wife
of Deacon John
Kyle Who Died
January ye 8th
1778 Aged –
84 years –

The following is from The History of Windham in New Hampshire by Leonard Allison Morrison, (Boston, Massachusetts: Cupples, Upham & Co., 1883), 68, 615, 616

KYLE FAMILY

John Kyle, of Scotch race, was a settler here previous to 1740, and lived near J.-L. Cottle’s. He m. Mary —, who d. Jan. 8, 1778, æ. 84 yrs.; he d. May 12, 1762, æ. 80 yrs. Child:—

Dea. John, who succeeded him on the farm; m. Agnes —; made an elder during the pastorate of Rev. William Johnston; date of death not known; was taxed as late as 1780.

Children, b. Windham: —
Ephraim2, b. July 1, 1753. (See Revolutionary history, p. 68.)
William
2, b. Aug. 8, 1755.
Mary
2, insane, and provided for by the town.
Janet
2, insane, and provided for by the town.

WINDHAM MEN IN THE BATTLE OF BUNKER HILL

Capt. Elisha Woodbury’s company, Colonel Stark’s regiment
CASUALTIES AND LOSSES
Ephraim Kyle, 1 gun and bayonet, £2, 2s.

Tim’s 7th-great-grandfather, John Kyle was born about 1682 in the small village of Lochgilphead, Scotland and was an original settler of Windham, New Hampshire.

His grandson, Tim’s 5th-great-grandfather, Ephraim Koyl, son of John and Agnes (—) Kyle, was born 1 July 1753 in Windham (Rockingham) New Hampshire, and died 25 August 1838 in Kitley, Johnson District, Upper Canada [now Elizabethtown-Kitley Twp. (Leeds) Ontario]. He married in Londonderry (Rockingham) New Hampshire (as his first wife and as her second husband),

Abigail (Reading) Kincaid, who was born 17 February 1753 in Portsmouth (Rockingham) New Hampshire, and died 11 April 1810 in Kitley, daughter of John and Mary (—) Redding.

Abigail had married (as her first husband) John M. Kincaid, who died in the 16 August 1777 (Revolutionary War) Battle of Bennington while serving with Ephraim. The Americans successfully defended colonial military stores against a British raiding party. After Abigail married Ephraim they moved to Canada about 1792, and had settled on Irish Creek, near a place called Koyl’s Bridge, in Kitley by 1803. After Abigail died, Ephraim married a second, unidentified wife, who died in Kitley, 6 September 1844.

Ephraim & Abigail were the parents of seven children. The firstborn, Jane Koyl, was Tim’s 4th-great-grandmother. She was born 4 April 1779 in Manchester (Bennington) Vermont, and died 19 October 1870 in Albion (Orleans) New York. She married (as her first husband) Abram Randolph, son of Benjamin Randolph & Jane Long, on 15 January 1797, and bore him eleven children. Abram died on 18 November 1824 and she then married (as her second husband) David Coombs, on 25 February 1847.

“The Death of General Warren at the Battle of Bunker’s Hill, June 17, 1775”
by John Trumbull

Private Ephraim fought in the Battle of Bunker’s Hill near the beginning of the Revolutionary War. He was wounded by a musket ball which entered his jaw and lodged in his neck, and was later removed, leaving a scar. As he was being carried off the battlefield his gun and bayonet were taken from him, for which he was later given some monetary compensation. Promoted to sergeant, Ephraim went on to fight in the Battle of Bennington two years later.

The Battle of Bennington was a battle of the American Revolutionary War, part of the Saratoga campaign, that took place on August 16, 1777, in Walloomsac, New York, about 10 miles from its namesake Bennington, Vermont. ~ Wikipedia

Apparently the name Kyle was used in the United States, but changed to Koyl when the family moved to Canada. Ephraim is listed under both spellings in his Revolutionary War pension files. It’s puzzling why Ephraim decided to move to Canada after fighting on the American side of the Revolution.

autumn in the quiet corner

10.14.19 ~ along Rte. 169

Every autumn we take a leaf-peeping drive up Rte. 169 in the “Quiet Corner” of Connecticut. The state highway winds slowly through scenic countryside but it’s almost impossible to stop and photograph anything because there are no breakdown lanes on the side of the road. We stopped at a cemetery, however, and found two beautiful trees, one in full fall color and one with about half of its leaves already down on the ground.

10.14.19 ~ along Rte. 169

We were headed for the Vanilla Bean Café in Woodstock where we enjoyed a lunch made from local farm-to-table ingredients. We missed coming last year because we were in North Carolina welcoming Finn into the family. (The little explorer has started walking! He’s been raring to go since before he was born, so it’s not too surprising. He’ll be a year old on November 1st.)

10.14.19 ~ along Rte. 169

After lunch I was disappointed to find the Christmas Barn was closed for the Columbus Day holiday. And then Tim was very disappointed to find that Mrs. Bridge’s Pantry had gone out of business. A lot can change in two years. But we found a new antique place, the Rusty Relic, which we both enjoyed exploring before we set out on the return trip home.

10.14.19 ~ along Rte. 169

Recently I have discovered cassava flour. And the discovery has come at a most opportune time because my gut problems have been getting worse over the past year. Bad enough to send me to a gastroenterologist. In addition to sticking to the paleo diet, I am now incorporating a low-FODMAP diet into the plan.

10.14.19 ~ along Rte. 169, a new antique store, one of three buildings

I’ve always been sensitive to wheat and milk and because of this have not had pancakes in many years. For a while I could eat some gluten-free pancakes, but they were often made with almond flour and I’ve developed a sensitivity to nuts. But cassava flour is made from a root vegetable (thank goodness I can still eat those!) and I found a paleo recipe for cassava pancakes made with coconut milk. (grain-free, gluten-free, dairy-free, nut-free) We tried them and couldn’t believe how good they tasted!!! Tim even said he didn’t think he could tell the difference between them and wheat pancakes.

10.14.19 ~ at the Rusty Relic

So now we’re enjoying a new (revived) tradition, Sunday morning pancakes. And that is part of what was very nice about our autumn drive this year. We had cassava pancakes at home before we left and felt like real New Englanders for the rest of the day, taking in all the sights and sounds and tastes of a crisp fall day.

10.14.19 ~ at the Rusty Relic

feathered stomachs borne on mighty legs

10.14.19 ~ Brooklyn, Connecticut ~ emu

Emus are little more than feathered stomachs borne on mighty legs and ruled by a tiny brain. If an emu wants one of your sandwiches, he will get it, and then run away. He cannot help you with your sudoku.
~ Richard Fortey
(Horseshoe Crabs & Velvet Worms: The Story of the Animals & Plants That Time Has Left Behind)

Last weekend we stopped by Creamery Brook Bison looking for local bison meat. Nobody was home, except this curious creature, who came over to its enclosure fence to check us out.

10.14.19 ~ Brooklyn, Connecticut ~ emu

The more I talked to it, the higher it lifted its head. Wonder what was going on in that little bird brain. Thinking about me as a potential source of food, no doubt. I don’t think it gets its picture taken very often.

10.14.19 ~ Brooklyn, Connecticut ~ emu

portrait setting

9.1.19 ~ my gull friend at Eastern Point Beach, portrait setting

Last night we went down for our last supper from the concession stand at the beach. (Tonight will be the last night it is open but it is supposed to rain today so we won’t likely be going down there.) As we were waiting for our order my gull friend flew to the post nearest Tyler House to greet us. I took a few pictures and then was suddenly inspired to try out the portrait setting on my camera. The gull was happy to keep posing.

9.1.19 ~ portrait setting
9.1.19 ~ portrait setting
9.1.19 ~ this is where he was standing for his portraits

When some people approached by land and a noisy little motorboat came close to shore, he took off and didn’t come back while we were eating on our bench. But I was grateful for the short visit we had.

9.1.19 ~ a young ring-billed gull who watched us eat our supper
9.1.19 ~ so long, summertime

I expect we will bring our own food down to the beach on warm autumn days, but I have to say, this was the first summer I’ve actually enjoyed in a very long time.

a cast of characters

8.16.19 ~ Eastern Point Beach
This is probably a laughing gull somewhere on the road to adulthood.
It takes them 2-3 years to gain adult plumage.
He kept a close eye on us, staring intently as we ate our supper.
This young ring-billed gull decided to attract our attention with all sorts of antics right in front of our bench.
His long call was not very long or very loud, thankfully.
They grey freckles on his head are fetching.
Showing off some fancy footwork.
This guy kept his distance as he was performing
the amazing “feet” of standing on one leg.
He stayed like that the whole time we were eating.
Look to the right…
Head down…
Keeping his gaze forward…
Now to the left. Perhaps he was doing some gull yoga.

There were no herring gulls there that evening, not even my friend with the mangled leg. But we were well entertained by these visitors.

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!

do not disturb

On our next visit to the beach we sat in our usual spot to enjoy some supper and noticed that my gull friend wasn’t around. Instead we had two large juvenile great black-backed gulls (above and below) pacing back and forth in front of us, probably hoping for a handout. Eventually they will learn that these two humans never feed gulls! Perhaps they were the offspring of the gull bothering my herring gull during our previous visit?

Anyhow, after we ate we took a little walk. Tim spotted my gull friend first, sitting way out on a section of rocks where we are not allowed to climb. I called out a greeting but he seemed determined to ignore me. He turned his head a couple of times, but didn’t respond. And so parts of a Van Morrison song came to mind…

Other times you just can’t reach me
Seems like I’ve got a heart of stone
Guess I need my solitude
And I have to make it on my own

Well I guess I’m going A.W.O.L.
Disconnect my telephone
Just like Greta Garbo
I want to be alone

Too long to decode all the secrets
Have to get some elbow room
Most people think that everything
Is just what they assume

Well I know I’m going A.W.O.L.
Tell everyone I’m not at home
Just like Greta Garbo
I just want to be alone

~ Van Morrison
♫ (Just Like Greta) ♫

Having a very strong need for “alone” time myself I gave him his space and let him be.