My Journey to Become a Writer 03/27/2024 Post #87

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I’d opened my inbox in February of 2022 in the midst of a real life nightmare. My mom had done one round of high beam radiation in hopes of fending off pancreatic cancer a little longer, and it was like somebody had flipped a switch, totally intensifying her suffering. Just after her first treatment, she’d headed down to the hospital’s Starbucks in hopes of being rewarded by my dad buying her a Rice Krispy Treat – the one thing she was looking forward to.

She never got to eat it – nausea hit out of nowhere. She threw up straight into the paper sack, which disintegrated on impact. People started scrambling for a mop and the soggy bag containing the bakery item was whisked into a wastebasket.

Instead of bidding farewell to it, my mom mourned, “But it was still wrapped – can’t I have it?” The answer was, “No,” and she was so sad, saying, “But I didn’t even get a bite.”

Other than that, radiation hadn’t been that bad – for an hour or so; but then the side effects started coming – that long list the doctor had read (because of legal obligations) with a tone that made me feel like my mom was signing up for a time share our family could never escape.

“Yes, there is a risk of paralysis; but that’s highly unlikely,” the doctor brushed our concern aside, bristling when my mom asked about his qualifications. Briskly he made it clear he was the head of his department, which she would know, if she’d paid attention to how his name was written importantly on the wall in the waiting room.

“I don’t like him,” she’d disclosed upon leaving the building, shuffling along with her walker on wheels. She wasn’t alone in that opinion.

She loved her surgeon. “He’s so cute, and so kind, and so personable, and I’m just sure he played baseball, because only a person who’s played baseball could be that laid back. I like him so much!”

I liked the surgeon, too – not because of those credentials; but because when he was asked, “If this was one of your parents, would you want them to have this surgery*?”

*When I say “surgery” here, I’m referring to “The Whipple” which is no small matter. It’s a removing and rearranging of some major components of the human body. Here’s a before and after depiction:

His response was, “That’s a good question. This is a major surgery. If it was my mom, she’d want to try anything and would totally have the surgery, and I’d support that decision; but if it was my dad, there’s no way he’d do it – he’d just want to live out his life while he could and not have all that intervention, and I’d totally understand that, too. Everybody’s different, and each person has to decide for themself what they’re going to do.”

I’d asked the radiation doctor the same type question, and his instant response was, “100%. They should totally do radiation, no doubt.”

Well, let’s just say the way he said “no doubt” did make me have doubts. His over-confidence came across like arrogance and made my mom and me very uncomfortable; but she decided to sign on the dotted line – after all, it was only for five treatments.

She did the first one, and by nightfall, was moaning, “My spine! My spine!” and kept telling me her pain was at a ten. She had been an I.C.U. nurse and knew the proper use of the number system, so I had no doubts this was bad, and might better be described as an eleven, because she wasn’t one to whine.

I asked, “You’re a nurse, what would you tell somebody else to do?”

“I’d say, ‘Get to the E.R.'”

“I’ll take you, do you want to go?”

“No.”

We happened to be having an ice storm, and this conversation was repeated again and again as I tried to get ahold of a doctor or someone who could help. When the sun rose I had yet to sleep. Considering my mom’s excruciating pain, and that she’d decided she didn’t want to continue radiation or any other treatment, we contacted Hospice, and she signed up to turn her care over to them in hopes of somehow getting some relief.

That day was a flurry of moving furniture, de-icing and shoveling the driveway, setting up medical equipment, meeting with care providers, contacting family and trying to keep her comfortable.

It took a long time for the medicine to get ahead of her pain, so we went through another night of very little sleep.

I’d been trying to keep my mom’s enormous social circle in the loop through CaringBridge. It seemed the only like the best solution for including the numerous people who shared concern for her. Here’s the post I put on CaringBridge, which was later transferred to my blog:

A Bad Reaction to High Beam Radiation

I’m not one to check my inbox very often; but I soon found the following email in response to me saying my mom was going on Hospice. I hesitate to share this, because I don’t want to point fingers. I simply want to express what kind of criticism writers can face when they dare to be real:

[Your mom’s] health is not fodder for a public extravaganza so that you have a captive audience on which to hone your writing attempts.  When I last spoke with Beth, she seemed fine.  She told me she decided to stop radiation treatments because the machine was too loud in her ears. I know you have been trying from the start to convince her to reject any medical care at all because of your weird belief that God will handle it.  It seems like you have succeeded in telling a nurse that medical care is useless, wrong, what?  If we are completely, and are supposed to leave everything in our lives up to God, he would not have provided us with the brains we have to possess medical knowledge.

Now you tell me she is on “hospice” and taking morphine for her pain.  Is she actually having physical pain from her cancer, her hip, her leg, or what.  I sent you an email yesterday and have not received an answer.

It seems you are using this occasion for your own purposes, rather than having Beth’s best interests at heart.  Even without medical treatment she may last several years, so don’t get your hopes up.   If you anticipate using her illness and death as the subject for a book, you should know that Audrey Lourde already did that, so it’s not a new idea. I would appreciate a response about her “pain.”  thanks.  [Author’s name withheld]

Wow.

That hurt.

On so many levels.

I was tempted to rally.

“I sent you an email yesterday and have not received an answer.” This seemed like such a ludicrous accusation considering the eight ring circus I was living through, and when had I become her personal liaison? For that part I could rile myself to muster an inward retort.

But the rest?

I was a sleep-deprived, scared-to-death, daughter watching my mommy dying, trying to ward off my introvert tendencies so that the people who loved her could know, and so they could pray, and yes, so they could prepare for what seemed inevitable.

I’m not sure where the author of this email gathered the information that I’d been trying to convince my mom to reject all medical intervention. That seemed like an argument she’d manufactured in her head. It wasn’t based on truth; but even that straw man embarrassed me and made me feel like everyone must think of me as backwards for hoping my mom would go on Hospice.

Did I believe it was in God’s hands? Yes; but not in a blind and handcuffed sense.

As soon as my mom heard, “You have pancreatic cancer”, her own response had been, “Well, that’s a death sentence”.

She told me, “I was so tired at that point I didn’t care. All I wanted to do was crawl into my casket and be done.”

But she didn’t do that.

She lived nearly two more years, and I stuck by her and tried to include everyone by posting updates, and one person after another thanked me for that at her before, during and after her funeral, and I look back at what I wrote and am reminded of what we went through and what a blessed time that became. I’m thankful to have these memories with her recorded.

In a strange, strange way, cancer became a gift that brought my mom and I closer together and gave her a chance to see how greatly she was loved.

I’m grateful to God that He gave me the strength to keep writing, because when I received that email, I nearly shut down for fear of more false accusations.

Even in sharing that painful email with you, I fear that I may be opening myself up for speculation and criticism; but I can’t help but think that’s part of the writer’s struggle with being real. We have all had arrows shot at us, and showing our wounds puts us at risk.

I mean, I bet before you opened this post you didn’t have it in your heart to say to me, “I know you have been trying from the start to convince her to reject any medical care at all because of your weird belief that God will handle it.  It seems like you have succeeded in telling a nurse that medical care is useless, wrong, what? ”

But now, just by my planting that seed here, you might be saying, “Maybe there’s some truth to this email she got. Maybe she is trying to write a book about her mother’s cancer!”

The craziest part of the whole thing was that I had actually set aside my writing to help my mom, and here I was being accused of trying to profit from her suffering by recording our experience. To further complicate things, people kept telling me again and again, in response to my blogposts about her condition, “You need to write a book!”

Talk about mixed feedback and mixed feelings.

The insinuation that I would get my “hopes up” so that she would die sooner seemed ridiculous, and yet, there was the reality some days when my body was so tired that I hoped it wouldn’t last much longer. Not because I wanted to say goodbye; but because I was so exhausted I worried my body would give way, and she would outlive me – and that would kill her.

What was I to do with that complicated emotion? Disclose it to someone sneering at me through an email?

And wasn’t the backlash really brought on by that person’s fear, and pain, and helplessness?

Could I rise up in compassion toward my accuser instead of fighting back in self-protection and preservation?

Could I acknowledge that it’s a confusing and terrifying prospect to hear about somebody’s choice to go on Hospice, especially from afar?

All I really wanted to do was curl up in a ball.

I wanted to stop writing; but I didn’t.

Here’s a post from about ten months later, that I’m thankful to have:

Where the Sidewalk Ends

I started out telling you about the writer who doesn’t write about himself.

I do. I write, and I wonder what other people will think about what I say.

I know some will judge; but hopefully others will feel less alone.

What Did I Accomplish Today to Be a Writer?

I did Day 87 of the 100 Words a Day Writing Challenge 2024 through LA Writer’s Lab, and I participated in a writing group led by Mary-Beth Manning.

I also wrote all this and once again, made the decision to keep talking about what I’m going through, despite the fact that I will probably be the subject of more fiery darts in the future.

Thanks for reading what I’m writing,

Jody Susan

When I typed in #87 to the search bar, the following post came up, and the title startled me. If I let you read it, and you see the part where I admit I’m relieved my mom died, I wonder what you will think of me? I can’t care at this point. I just know there’s probably someone else in my shoes who needs to feel a little less alone, so I’ll say what I did back then, even if it makes that email I’d gotten more than a year before sound true:

The Last Stages of Pancreatic Cancer