And Then Your Life Turns Upside Down

One year ago next Tuesday – on March 12, 2018 – Barbara was diagnosed with pancreatic cancer. Five months to the day later, she was gone. The truth is, that’s four months longer than we expected at first. A friend of my mother’s had just recently been diagnosed with cancer and died within three weeks. We pretty much thought the same thing would happen … even though they told us that pancreatic cancer isn’t the death sentence it used to be.

It may not be. But it ain’t great.

Barbara and I are both researchers. We each found out very quickly that the statistics show close to 75 percent of patients still don’t survive the first year. Plenty of people told us stories about friends who were alive 10, 12, 14 years after their diagnosis. But the numbers show less than 10 percent get that kind of time.

That’s not the only reason Barbara was pessimistic.

For one thing, she never felt like she was going to have a long life. I don’t really know why, except that many of her relatives died young. More than that, she just hadn’t been feeling well for long enough that it was easy to believe she’d been sick for awhile. It wasn’t anything dramatic. Often just low energy. But, nearly a year earlier, at the end of March in 2017, her doctor thought she’d found something she didn’t like. Barbara researched that too, and the only thing it could be at her age was cancer. She also expected the worst then, but it turned out, after a few tests and three weeks of anxiety, that it was nothing at all.

Then, just a couple of months later, in June, Barbara’s blood sugar levels shot up.

“You’ve got diabetes,” her doctor said.

Barbara always knew she might. Her father was a diabetic, and, I think, others in the family were as well. Doctors had always told her she was likely to develop it, so there was little reason for doubt. It wasn’t so bad that it would require insulin or other medications. She just needed to modify her diet and get more exercise.

Houses
To keep herself motivated, Barbara began to take pictures with her phone of
the houses and gardens she’d pass on her walks. She’d post them on Facebook.

Barbara ate about as little as any person I’ve ever known. Apparently, she’d always been a bad eater. It was a constant source of anxiety for her parents when she was little. But she did like to eat candy; peach rings and jelly beans. Ice cream too. Now, she cut it all out, cold turkey. And she started to walk. Every day. Three to five kilometers. Her weight came down, and her blood sugar normalized.

By August, Barbara had lost about 20 pounds. She was feeling better than she had for years. And she looked great! But then, when she hoped to stop losing the weight, and just maintain it, it kept coming off. Nothing too startling at first. I didn’t even notice. But a pound or two pretty regularly. She was sure that something was wrong … but it’s hard to get anyone to take weight loss seriously.

“What, you can’t keep the pounds on…? Wish I had that problem! Ha, ha.”

At the end of February in 2018, Barbara got the flu. (It was a bad year for the flu last year.) Her case wasn’t too terrible, but after she got better, the weight melted off. There were other problems too. And now she was really starting to look sick. So, on Friday, March 9 (I was in Brampton, giving an author talk to school kids), Barbara had a friend take her to the hospital. She waited forever in Emergency. So long, that I was back home and spent the last couple of hours with her.

“It’s going to be bad,” she kept saying. Trying to prepare me. I didn’t think so.

“It’s just the diabetes. It’s not properly under control. You cut out the candy, but you never really replaced the calories. You’re just not eating enough. We’ll get it figured out.”

Happy
After three months of walking, Barbara was feeling great – and looking great!

Unless the young doctor who finally saw us that day was the best actor in the world, she thought the same thing too. She filled out some forms to enroll us in the diabetes education program at the hospital. But she also wanted us back at the hospital on Monday so they could run a few tests. “Just to rule out anything else.”

So, we went back to the hospital on Monday afternoon, March 12, for an ultra sound and a CT scan. They told us that, since the tests were ordered by an Emergency Room doctor, they would have the results for us in Emergency … if we wanted to wait. It was another LONG stay, but how could we not?

“It’s going to be bad,” Barbara said again.

I still didn’t think so. Even when they asked her if she had someone with her for the news, I wasn’t too worried. “It’s just going to be a lot to take in,” I said. “There’ll be a lot they need to tell you, and they want to know you’re not alone.”

I think she may have told me I was being naive.

I guess I was. But that changed a short time later.

We were still sitting in Emergency, waiting, when the triage nurses changed shifts. I watched as the new one coming on duty looked around the room while the old one explained the situations with the various patients. I couldn’t hear anything, but the way they looked at us, it was obvious this was going to be bad.

Barbara went up to them.

“I can see it in your faces. It’s something bad. Can’t you just tell me?”

They apologized, and said it had to be a doctor. But, yes, it was going to be bad.

It wasn’t too much longer before a doctor finally took us inside. It wasn’t the type of room they normally take you to in Emergency. It was a small office.

He didn’t sugar coat it: “We can’t be 100 percent sure yet. You’re going to have to come back for more tests. But the only thing it really could be is pancreatic cancer.”

I don’t think we had any questions for him. It was too soon, and even Barbara seemed shocked it was that bad. He told us they would schedule the tests and that we could stay in the office as long as we needed. I don’t think we stayed very long.

Four
Barbara was energized by the news that Amanda and Brent were engaged. She was so glad to see them when they came to visit us later in March before our family’s big Passover seder.

I don’t remember anything about the drive home. (It’s, literally, only five minutes.) I remember how hungry I’d been before, but I don’t think we had any dinner. I just remember us sitting on the couch in our den, side by side. I don’t remember much of what we talked about. I don’t remember if we told any family that night. (I’m pretty sure I called my mother.) I don’t remember going to sleep either, but I know we did. Then we woke up the next morning and sat on the couch again.

She cried a little. I probably cried more. And then we thought, “We have to do SOMETHING.” So, I called her family doctor and told the receptionist what had happened. My memory of that is that she was quite good on the phone, but that there weren’t any appointments until 9:10am on Thursday. (This was Tuesday morning.) I booked it, but I told her we were five minutes away and that if ANYONE canceled before then, I wanted their appointment and that we could be there on a moment’s notice. That didn’t happen … and I don’t honestly remember how we got through the rest of the day.

By Wednesday, Barbara was yellow with jaundice. More yellow than you can probably imagine. With a sort of golden tinge. I’ve never seen anything like it. Again, I don’t remember how we got through the day. But, on Thursday morning, we saw the doctor. There was nothing, really, that she could do. I think she prescribed something to help Barbara relax. And she got the ball rolling on all the appointments we’d need at the hospital.

Things happened very quickly after that.

Tests and procedures and poking and prodding. Meetings with the oncologist. More scans. A stent to improve liver function. (Jaundice gone!) A biopsy. (100% official now.) Some of the procedures were difficult. Barbara was hospitalized for a few days. It was during that time that Amanda called to say that she and Brent had gotten engaged. You’ve never seen a person’s mood change so quickly and completely as Barbara’s did then!

The tumour was not very large. However, it was in a dangerous position, wrapped around the Portal vein, which made it inoperable. That being the case, Barbara said she didn’t want chemotherapy. Why bother? But her doctor explained that, while it was a long shot, chemo might shrink the tumor enough that they would be able to remove her entire pancreas. She would truly be a diabetic then — that had been a red herring, by the way; it was probably pancreatic cancer all along (the fact that it’s so hard to detect is partly what makes it so deadly) — but at least there was a chance. Only about one in five people diagnosed with pancreatic cancer have it discovered early enough that chemo is even an option … so Barbara felt she had to try.

Fierce
The morning after her first chemo session. Barbara had her game face on! She’d been
bloodied and bruised by some of the procedures to get her ready. Her hair, in fact,
is tangled with her own blood. She couldn’t wash it out for a couple more days until a
home care nurse removed all the chemo-related attachments you can see on her chest.

Chemotherapy began on April 6. We really knew nothing about it then, except that chemo makes you nauseas and you lose your hair. They told us the drugs Barbara got wouldn’t cause hair loss, but she was likely to become nauseas — even though (I swear!) she hadn’t thrown up since 1968.

We were told her chemo would be very aggressive; a heavy dose of several drugs, administered over a five-hour period. Then she’d have a “poison baby bottle” full of more drugs attached to her chest that she wore in a sling under her clothes at home for the next 46 hours. This would all repeat every two weeks until she’d had six sessions.

Chemo drugs don’t actually make you sick at the time they’re given. The effects creep up on you over the next few days until they wipe you out. But Barbara never did throw up! She did get very tired, and she  had some other horrible stomach-related side effects. There were good days, too, where friends might come over, or the two of us would go out for lunch, yet there were plenty of days when she could hardly get out of bed or when the other side effects got really awful. Enough that, one time early, and then again after the fifth session in mid June, the oncologist took her off chemo to give her body a break. We were going to take all of July off and then start up again in August with a different combination of drugs. She’d have to have them weekly this time, but a least the new drugs shouldn’t make her so sick.

Gardens
With Josh and family at Edward’s Gardens the day after our appointment
at Princess Margaret Hospital. This would be the last truly care-free day.

During the break, our oncologist referred us to Princess Margaret Hospital in Toronto for a second opinion. We had an appointment there on July 18. They explained in more detail why the tumour was still inoperable, and they concurred with what had been done in Owen Sound so far, as well as with the new plan for going forward. They had some other suggestions too, but they said Barbara wasn’t sick enough yet for any of their clinical trials.

So, things actually seemed pretty good. Barbara was feeling much better after nearly a month without chemo. But the trip to Toronto exhausted her. She slept for nearly 48 hours when we got back. I slept for nearly 24 hours myself, and I was the healthy one! Still, things didn’t seem too bad. Until, suddenly, they did.

By the end of July, Barbara was no longer feeling sick because of chemo … but she was dying because of cancer.

ToadNear the end, we took Barbara around the grounds behind the hospital in a wheelchair.
Amanda found this toad  in the road. Barbara (and her children) loved little critters.

I’ve often wondered since August if the treatment was worth it. Would things have been more peaceful without the chemo and all its side effects? But, without it, Barbara may not even have gotten those five months. Maybe she woudn’t have felt so sick at first, but she probably would have been in pain more quickly. She never experienced any pain at all until late in July. That’s when they discovered the cancer had spread to her liver.

I think it was for the best that it went so quickly after that.

At least we had time to move up the wedding.

Wedding
Amanda and Brent’s wedding in the chapel at the Owen Sound Hospital was so very lovely.

By then, I was making plans for a wedding and a funeral. I don’t recommend it if you can avoid it. But if you ever have to, I hope you’ll have the same love and support from family and friends that I had.

It made all the difference.

It still does.

25 thoughts on “And Then Your Life Turns Upside Down

  1. Eric,

    Thanks for sharing your special memories of such a difficult time. Life is so precious. My thoughts and prayers are with you and your family.

    Bill

  2. Thank you, Eric. I think of her pretty much every day. I doubt that will change for the rest of my life.
    Allan

  3. Thanks Eric for writing what must have been very very difficult and relentless seeming history. When I heard about Alex Trebek yesterday , I just had a sinking feeling – I hope he is in the minority where things end well.

    Everything in my life seems to remind me of Barbara.

    I remember things I want to share with her or I see things I know she would like. I guess it will always be that way – oddly enough , before Barbara found me again, that was also the case. I had no hope of finding her but I thought of her often.

    I will always wish she and you never had to go through all that. Sending you lots of love,

  4. For what it’s worth, I really enjoy your writing and reading these posts. Even this one, which might have been more difficult to write. Thank you for sharing. Sending you a big hug.

  5. Eric,
    If talking about it helps, I am sure that all your readers are more than willing to listen.
    Do it regularly if you need to.
    This is one way we can support you at a distance.
    Glen

  6. Dear Eric, I read this with tears in my eyes, wishing that you had never had to go through this. I think it’s really good that you wrote and talked about this painful journey. Hopefully, it helps somewhat to unburden yourself. I am sending you lots of love and hugs and wishing you strength to continue your work–strength that I know you possess. I look forward to reading future blogs about sports.
    Linda

  7. We were so fortunate to have that brief visit with you two in August 2017. Then Barbara took me for one of her long walks around the neighbourhood of our B&B. … I first met Barbara probably in 1987 or even earlier. While cleaning out some old files, I came across a Freelance Editors’ Association of Canada seminar outline from Nov. 1987. “The session was chaired by former FEAC president Barbara Hehner. Barbara opened the discussion by identifying the twin perils almost certain to threaten every freelancer at some point in his or her career. Desperation and Hubris.” She is often in our thoughts.

  8. Once again, you have lovingly and courageously captured both the pain and the bravery of those last months and days….your honesty is a wonderful reflection of your love for Barbara. I hope that, as the days and the weeks pass, writing it all down continues to help you to with deal with the enduring pain of your loss.
    Helen

  9. Oh Eric. I was thinking the other day that you were coming up on the one year anniversary of the diagnosis soon. I couldn’t fathom it was a year.

  10. That photo, Eric, of Barbara in the blue shirt a day after chemo…She looks just a different kind of BEAUTIFUL! It’s weird I don’t think I ever saw her like that…wistful, even with all the “medical adornments!”
    I questioned too if all the horrible “treatments” were worth it. You answered it…the gift of time….just not enough of it!

  11. This is a heart breaking story Eric. I’m so very sorry and sad by your deep loss and the pain that Barbara went through.

  12. Thank you Eric, for sharing. What a story! I miss Barbara often and shall treasure that blue blouse that is now in my home. Plus some of her buttons! Hoping to make some soup and cookies very SOON to bring over to you. Thinkng of you often. Sending love and hugs.

  13. Thank you for sharing. My mom had pancreatic cancer. She had the whipple surgery and chemo twice…2017 and 2018. My mom was diagnosed in September 2016 and passed away December 2018. Whenever I hear the words pancreatic cancer, I am speechless.

    1. I remember when you were posting stories about your mother’s passing. I didn’t know it was because of pancreatic cancer. How horrible that, even with the whipple surgery, she only got two years and two months. For Barbara, the surgeon at Princess Margaret explained that, even though they could technically do the whipple surgery (though they would have to remove her entire pancreas, because it turned out it was under-sized), the fact that the tumour was tied in with the Portal vein meant the odds were nearly 100% that even after surgery, the cancer would spread to another major organ. So they just didn’t believe it was worth putting her through it.

  14. WOW Eric! I don’t have the right words to convey what I want to say to you.
    All I can say is Barbara was a true fighter & a brave woman & she had the BEST possible partner in YOU. Having you by her side gave her strength & willpower.
    You are right that questioning was the Chemo worth it is sort of rhetorical. She tried it & & it worked til it didn’t. And you now know Pancreatic Cancer is brutal. I’ve only known 1 person who lived with Pancreatic Cancer for 4-5 years……sad but true.
    Thank you for writing such a loving & bittersweet blog. The garden photos really reflect Barbara & the wedding pix are precious. Thank G-D Barbara got to see her daughter married…..that would have given her peace of mind.
    Thank you again for sharing your journey with us…..
    (((hugs))) Sherri-Ellen T-D.

  15. You write so beautifully, Eric. All your writings about Barbara and your relationship, through thick and thin, from reliving some wonderful memories to sharing those terrible moments of sorrowful melancholia, are subliminally filled with poignant positivity usually resulting with us, the readers, ultimately feeling uplifted even while having experienced and appreciated your saddest of remembrances.
    You are truly a glass-is-half-full writer whose celebration of life shines through always.

    1. When I was young – really, well into my 20s – I thought bad things couldn’t happen to me. I guess that’s the privilege of growing up in a happy family. Life, of course, beat that out of me eventually. These days, I would say I’m an optimistic pessimist. I’m happier expecting things to go badly, and then being pleasantly surprised if they don’t.

  16. A most moving piece, Eric. I can only imagine how difficult it must be to recount these events. But if it helps your overall life perspective it is well worth doing despite the pain.
    Walking in another’s shoes is always a challenge, but you’ve allowed your friends to do that and hopefully they’ll be strengthened in their own life situations.

  17. Eric having just met you… at Anna Maria… that was written beautifully… so sad you and Barbera had this happen… you both had a great love… you both did everything you could… still so very sorry for you both… Joanne C

  18. Eric,

    Thank you for sharing your story. It was very moving to read about all that you and Barbara went through.

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