Five Lessons Learned from My Mom’s Battle with Pancreatic Cancer

Five Lessons Learned from My Mom’s Battle with Pancreatic Cancer

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One year ago, in late September, just as I had finally gotten a pattern down of how the school year was going to look in 2020, my mother was diagnosed with pancreatic cancer.  This past year has been the hardest year of my life.  The journey has taught me many lessons, but these are the five that stand out to me as important as I reflect on her disease progression and, consequently, her passing in early May.

Lesson One: Pancreatic Cancer is a Nightmare

I'll never forget it.  It was a Saturday afternoon.  I was heading home with my kiddos in the car, and the phone rang.  It was a strange day for mom to call, because we usually spoke on Sundays.  I answered it in a chipper tone, because it was a pleasant surprise for her to call.  Mom was on my vehicle's speaker phone, so the whole car could hear.  She told me that she was in the hospital.  She didn't want me to worry.  She asked me if I remembered her stomach pain.  I had.  She had told me that she had been dealing with a stomach bug (which, of course, we decided was COVID-19, as all ailments were dubbed in 2020) a while back, but she stopped complaining about it, so I thought it had passed.

Apparently, it hadn't passed and the pain had gotten so intense, mom had thought she had a hernia.  She couldn't take it anymore, so she went to the emergency room early that morning.  The staff at the hospital was quick to try to send her home labelling her as a grumpy senior, but she held her ground.  She told them that she was a retired nurse, and she needed some imaging done on her abdomen.  After waiting for hours, due to COVID testing, and a packed ER, they finally admitted her and took some pictures.  She had a mass.

A mass?  "What's was a mass, mom?"  What did that mean?

She responded that they did not know yet, but she immediately knew it was pancreatic cancer.  She told me so.  She said, "Gretch, you know it's a killer.  People don't live through pancreatic cancer."

I was dumbfounded.  First, my kids just heard all of this, and I wasn't sure whether I needed to take her off speakerphone or just leave it on.  Surely, there were long conversations ahead of me to help do some damage control there.  Since they already knew, I let them continue to listen.

I consoled her and said, "Just wait until you know for sure, mom."  Maybe it was a mistake.  Maybe the mass wasn't cancerous, but something else weird that neither of use knew about.  Maybe there were things that could be done to help her.  Honestly, I had no idea how bad pancreatic cancer was until I lived through this last year.  I told mom not to worry and to just let the doctors do their jobs.

*** FAST FORWARD TO TODAY ***

The problem is: pancreatic cancer is so aggressive that the doctors don't have a lot of options for diagnosed people.  At the time, I had no idea about pancreatic cancer.  I didn't even know what color the ribbon was.  (FYI: it's purple; ironically, my favorite color. ...I am rethinking that now though...) Heck, I had no clue where it was located in the body.  Every time, I, personally, had a pain last year I'd say, "is this where my pancreas is?"  Thankfully, every time the answer was no, but still.  I'm kinda wishy washy as to where exactly this thing is located in my own body.  (If you are having abdominal pain, check out this article from John's Hopkins that may help you locate your own pancreas.)

*** REWIND TO THE EARLY DAYS OF MOM'S DIAGNOSIS ***

The options given to my mother were:

  • She could have a Whipple procedure done.  According to The University of Chicago Medicine, this is a major 6-hour surgery that takes from two to six months to recover.  Furthermore, a study done by University Hospital Plymouth NHS Trust identifies that about 75% of pancreatic cancer patients who have a Whipple procedure done will have a cancer reoccurrence, or
  • She could have aggressive chemotherapy and be even more sick for the rest of her life.

Mom was not going to be convinced to have the Whipple surgery done.  At 74, she was already stricken with a weakened immune system from COPD and something called NTM (Nontuberculous Mycobacterial) condition.  (I know, quite strange for a woman who didn't smoke.  Actually, in 2019, mom had confided in me that she thought her COPD diagnosis had to do with a chemical they used to use in the Operating Rooms many years ago to sterilize the air.)

Due to her health status, she felt fairly confident that her body would not have made it through the surgery.  Looking back at it, she was probably right.

After going back and forth for second opinions, getting every scope you can imagine, having a metal stent put into her pancreas, and hearing her options,  mom opted for chemotherapy.

As terrible and disgusting as you imagine it was, it was way worse.  She was not only viciously sick; she was heartbroken.  The diagnosis had devastated her, and the therapy only shone a spotlight on what the end of the road looked like.

Mom got so violently ill after just a couple of treatments and felt so wretched that she landed herself in the hospital in the beginning of December.  And, yes, COVID had it's part to play.  After not seeing mom, since the year before for Thanksgiving, I rushed down to Florida on an empty plane in the middle of the night.  When I arrived, I was not allowed to see her in the hospital, because no one was.  She was locked up mistakenly in a COVID unit.  (By the grace of God, she did not end up getting COVID in there.)

While I was in Florida, mom opted for hospice care.  And thankfully, she was quickly transferred to a Hospice House, where I WAS able to visit her in person.  She looked like a skeleton of herself.  She was so tiny and in an incredible amount of pain.  She kept telling me how weak she was, but I countered and told her how amazingly strong she had been through everything.

I don't think most people get the chance to choose how they die, right?  For most of us the decision comes so quickly that, it just kinda happens.  To this day, I am still in awe of how definitively she knew how she didn't want things to end.

Nevertheless, watching a loved one tortured by it was the worst nightmare I've ever experienced.  Pancreatic cancer is quick and relentless.  That was the first lesson I learned this past year.

Lesson Two: Speak Your Truth

If you've ever walked into a situation where a loved one is near the end of their life, you will know that time slows down around this person.  It is a strange sensation, but it has happened every time I've been close to losing a family member.  (I've never wanted or intended it to slow down, but it always does.  It feels like the answers are never quick enough, the car never drives fast enough; it's just all quite slow.)

Because of this slowness, it might feel like we have more time.  (It's what we crave, right?)  But the reality is...life is too short to wait for the perfect opportunity to tell people you love them.

The irony is that the deaths of my stepfather in 1998, and my brother in 2002, prepared me for this time.  Like have training wheels on my bike, I was confident that I would find my way through this, although it was a little rocky at times.

During my first visit down to Florida in December, I told my mom how much I loved her.  We talked about what she needed from me at the end.  We made plans; we laughed; and we cried a lot.  We didn't leave much on the table; and I left confident that she knew how much I loved her and appreciated her.

(((Side note:  If you are going through a similar situation, I implore you to speak your truth out loud.  Don't assume the person knows; don't leave it for another day.  Say it.  If it's upsetting, so be it.  At least, you won't regret not having shown your hand when you no longer have the ability to do so.)))

Out of everything that happened, those moments were so important for our relationship and for what occurred in the coming months.  Having the courage to speak your truth, is a lesson that I will never forget.

Lesson Three: Transfer the Power

Not everything that has to do with end-of-life situations is about emotions.  Some of it is about managing your loved one's care in the best way possible.  That may include convincing your mom (or other loved one) that it is time to let go of some mundane things like paying bills and dealing with household management.

Thankfully, her story didn't end in December; she was given some renewed life by the wonderful people at Hospice.  She did so well recovering from her issues with chemotherapy that she was able to go home and live there until a week prior to her passing.

When I arrived in Florida in December 2020, I was surprised at how I found my mom's living situation.  Armed with the knowledge that she was going to be transferred home, I went to my mother's house to make sure it was set up in such a way that she would be able to manage things.  When I really looked around, it seemed like her house was falling down around her.

This was a shock to me, because my mom would never let a towel be out of place, nevermind let things get unsafe in her home.  At the time, there was not a good way in or out of her home.  Living on the coast in Florida, she had an elevator to get to the first living floor.  It was constantly giving her problems.  The deck stairs to the back door were shaky.  There was storm debris all over the perimeter of the yard.  The locks didn't work right.  There was a hole in the skylight in her upstairs bathroom.  The list went on.

Although my mother's boyfriend lived with her, apparently, neither of them saw these things.  Maybe they were so focused on her sickness that nothing else was getting done.  Plainly, it was shocking to me.  I had been so focused on her care that I didn't even think that the picture was so much bigger than I had originally thought.

This is where I got it wrong.  I did what I could.  I replaced the locks.  Thankfully, mom had elevator people come and replaced her whole unit, so it would be safe.  I cleaned up the debris outside.  When she got home, she got someone in to fix the whole in the skylight upstairs.  But it wasn't enough.

This was the moment I should've put my foot down and told my mom it was time to transfer those things over to me.  I asked her gently, but I should've been more bold.  If I had, I think I could've save her from some anguish in her final days.

And to be honest, I can't blame her for not wanting to transfer things over.  For not wanting to admit there would be a time, when she was no longer capable of doing it all.  I cannot blame her one bit.  I just wish that she could've trusted that I would have paid her bills and kept everything going fine, without her having to worry about money all the way through her last chapter.

It's a lesson that I learned the hard way.  Transfer the power, the bills, the whatever, before it is taken from you.  Trust in your loved ones.

 

Lesson Four: Every Day is a Gift

To say we're all on borrowed time is a harsh reality, but it is so true.  Those of us to feel the sting of a recent loved one's passing know all too well how very limited and precious our time is here on Earth.

Mom lived in her house for five months after my visit to see her in December.  At first, she was relieved to have opted for hospice.  Her doctor had prescribed a steroid that helped tremendously with her lethargy and, of course, pain killers.  Heck, I kept asking when medical marijuana card was arriving, so we could had a good belly laugh about everything, but it never arrived.  (I think mom was a little concerned about smoking something, which I can't blame her for. COPD might make you a little wary of smoke!)

After the flood gates opened in December and I told my mom how much I appreciated her and loved her, our candid conversations never stopped.  She shared with me how scared she was about the end.  I told her that I was scared too.

Prior to mom's diagnosis, I spoke to my mother once a week.  I know a lot of folks out there chat it up with their moms multiple times a day, but my mom never wanted nor needed that.  In fact, if I called too often, she would get bored with me and hang up after a few minutes. I'm not even kidding. 😂

After mom's diagnosis, we spoke almost daily.  Basically, we shot the shit.  After years that my chatter-box ways bored her, I think toward the end, she found them therapeutic.  I was helpful.  I was needed.  AND I was more than happy to oblige!

After months of "doing well," mom's disease progressed and so did her boyfriend's nudging her to fight it.  He had successfully convinced her to stop hospice and to go back on chemotherapy.  Again, she got through just two weeks of treatment and declined quickly.

On Easter Sunday, we spoke with clarity.  She was sad.  Easter had always been particularly hard for my mom, because she lost her dad just two days after Easter many years ago.

After that, it's all a blur of curt calls with her.  "Gretch, I'm fine.  They're adjusting my meds; I'll talk to you tomorrow." Day after day, until I finally touched base with her nurse (who mom asked me not to bother).  "Your mom is experiencing some pretty intense anxiety.  We'll try to treat it at home;" to "Your mom needs to go to the Hospice House for med adjustments;" to "It's time for you to come."

When I arrived in Florida, I spoke with my aunt.  Perhaps, spoke isn't the right word, maybe:  I "cried" to her is a better statement.  She reframed it all for me so beautifully that I will never forget what she said.  She told me that being where I was had to be one of the most difficult things I would ever go through, but that it was a gift.

She was right.  Here I was; I had gotten all of this time with my mother that I constantly craved.  I really had her.  For seven months, I had been able to have frank conversations with my mother, to be there for her when she needed me, and to absolutely know what her plans were for the final moments of her life.

My aunt had taught me the lesson that every day is a gift.

 

 

Lesson Five: Let Go with Love

Of course, as I move on to this final point, my eyes are full of tears.  Make no mistake that letting go doesn't mean that the pain is any less potent than if we refuse to.  Here's what letting go with love meant in my mother's situation, and how I could comply.

In our previous conversations, when she was lucid, she told me that when the time came:  to make it quick.  Don't resuscitate her.  Don't give her extra meds.  Just keep her comfortable and pain free.

As a nurse, my mother knew all too well what death looked like.  (BTW It's not pretty.)  But, intimately, she had seen her husband die and her son die.  She was tortured by those memories.  Machines, tubes, endless IV drips, they were all instruments meant to heal but also signs that death loomed near.

She wanted none of it.  Her rationale?  Why would she want to be resuscitated only to go through the process of dying once again?  Yup, I totally understood.  In fact, I told her over and over again, that it was HER STORY and she needed to do whatever made her feel comfortable.  Of course, I wanted more time.  Of course, her grandchildren wanted her around for another Christmas.

...And of course, we'd all survive.  We would honor her and love her until the end of time; I just didn't want her to suffer any more.

When I got to the hospice house, she looked even smaller than she had before.  She looked weaker than when I last saw her.  How was it even possible, that she could've still been there in the flesh?  She had lost her short term memory, due to the saturation of drugs in her system.  Her body had begun to shut down.  Thankfully, she knew who I was.

I sat with her for her final days.  I cleaned her up.  I told her stories.  I read her emails to her.  We listened to meditations.  At every turn, when there was a decision to be made, I made the one that would hasten the speed of the process.  I carried out her wishes, and then vomited when it was all done.

Wouldn't we just do anything for more time?  Making all those decisions was hard, because it went against what I have been programmed to do: to want more.  However, making the decisions were easy, because mom had been clear all along with how I should handle things.  So I did.

In the end, in her final moments, they played out the way mom wanted them to.  No machines, no tubes, no endless IV drips, just a peaceful room and a shit ton of morphine!  (You know I had to add a laugh in there too; mom would have liked that!)

And when someone dies, and they are given the choice to dictate how that story will go, give that dignity to them.  Let go of them the way they want.  I promise you, it will hurt.  It will hurt so badly that you cry at random times.  You will wish with every part of your body that they will pick up the phone, if you call them.  But it will never hurt the way that it would if you regretted the way you didn't do something they needed at the very end.

The last lesson I learned from my mom's battle with pancreatic cancer is to let go with love.  It was the hardest lesson of all, but perhaps maybe one of the most important.

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