Making Chemo More Comfortable

Oh, goodness – this topic is vast, and I think so many people have different experiences. During Mom’s three years being off and on chemo, she experienced a multitude of symptoms, but rarely experienced the classic nausea and vomiting.  She did, however, often have a low appetite, and so would eat things like tapioca pudding or Ensure to keep calories coming in.

Symptoms are different depending on what type of chemo medication a person is taking. Some meds result in hair loss, but not all.  Some cause a terrible amount of nausea, and some are easily controlled with anti-nausea meds.  But there were many other effects that were a surprise.

When Mom was on a chemo cycle, she often got terrible mouth sores, which we would attempt to alleviate with a prescription mouth wash made with lidocaine.  During these times, she would not be able to eat acidic foods, so our menu would change to accommodate her needs.

Another med caused the skin on her hands and feet to blister and even slough off, and made them very sensitive and sometimes painful.  When this problem was very bad, Mom wore soft socks and gloves, and stayed off of her feet.  We put natural lotions and ointments such as “Unpetroleum Jelly” in an attempt to keep the skin soft and less irritated. Sometimes we would put these lotions and ointments inside her socks and gloves.

For the chemo cycles that caused her to lose her hair, we found that her head would get very cold, so she slept with caps on.  She would pencil in her eyebrows and put on eyeliner as she also lost her eyebrows and eyelashes.

Chemo and the cancer also caused a lot aches and pains, which she, of course, took pain medication for, but also would alleviate with warm corn bags and heating pads, or warm baths.

And then there were the hundreds of other ways that chemo had an affect on how the body functions, causing interruptions and complications large and small.  So many things to remember as more and more new medications were introduced, i.e., chemo has messed with clotting factors so we are now taking Coumadin, and not to eat too many greens so as not to further mess with clotting factors.  And by the way, also make sure to eat lots of fruits and veggies so as not to get constipated, and so on, around and around. To say it is head-spinning to keep up with it all is a drastic understatement.

What were some of the side effects you or your loved one experienced with chemo, and how did you deal with them?

Forgetting

My mom is dead.

Oh, I know – that’s old news.  It’s been a year and a half, for goodness sake.

Today, my husband and I finalized our divorce.  We went to breakfast afterwards, and started texting or calling family members to let them know that it was all done, and that we were okay.

I picked up my phone to call my mom.

And I experienced that jarring feeling that has happened so often as my mind, body and soul remember that she is gone.  This jolt happens less and less often as time goes by – it’s probably been a few months this time. It is absolutely mind-boggling that we could have gone through such a long illness with her, followed by the trauma of losing her, and still – I forget.

I don’t know what this phenomenon is, but I have experienced it before. Many years ago, we suffered the loss of a good family friend, who was really more of a father figure to both my (ex)husband and I.  Even though I had experienced many more deaths in my life, this one was the hardest by far at that time in my life.  I grieved deeply for him, and to this day, I still forget sometimes, still think that I should stop and see him when I’m in Phoenix.  And then there is the jolt, less painful that it was a few years ago, but still like a small blow and a little bit of fresh grief.

With my mom, this blow has been a little harder (maybe a lot harder). There are life events that really seem like they should be shared with a mom, and I don’t have one of those, except in whatever ethereal form she may be residing in.  Most days, this is manageable, has even become normal.

Even today, even in the midst of a major event, the moment passed quickly.  The pang of fresh grief was a bit shorter than it has been at some other times, which leaves one feeling a funny combination of guilt and relief.

But it’s there. I suppose it will always be there, and that’s ok.  It would be weird if I didn’t feel it at all.

I hope that day never comes.

Coming Up for Air

It has been months – MONTHS – since I have written a post for this blog.  I could tell you that I was busy with selling my mom’s house, and with our move, and with the holidays, and with life.

Which I was.

But that’s not the reason I didn’t write.  The truth is, somewhere around the one-year mark, the wind went completely out of my sails.

I’m not sure what happened, exactly.  True, the house took much longer to pack up than I had anticipated, and the process proved to be akin to torture.  We were exhausted and pushed to our limit with the emotional strain of sorting out what articles of Mom’s life would stay with us, go to another family member, or go away forever.

The sale itself also took longer than I had hoped, by far.  It was disheartening that people would walk through my mother’s home over and over, and after we had come to the painful decision to sell it, no one wanted it.  We dropped the price several times, and finally accepted an offer below what our bottom line had been.  But, it was done, and the man who bought the house was a kind one, full of humor at the closing.  Mom would have liked him, I think.

Somewhere in there was our first Christmas without her, and the first anniversary of her death, December 31.  And then what would have been her 61st birthday just three days later.  All of these milestones passed with us living in our home with no furniture to speak of, our belongings packed in storage except for what we could fit in suitcases.

We were also house-hunting furiously, but as hard as we tried, we could not find our new “home”.  So, we settled on a cute rental and decided to stop looking for a while.  That was a good choice, because I have realized that I actually had no idea what I wanted to do next.

That could be what happened.  I might have run out the sense of purpose I had been existing on for the four years prior.  My purpose had been to keep my mother alive.  And then it had been to make her last years great and memorable to the best of my ability.  And then it had been to support her during her passing.  And then it had been to make her life and her passing mean something by writing about it.  And then it had been to honor Mom’s wishes as I navigated the unbelievable amount of paperwork and stress that comes from being the executor of an estate.  And then it had been to help my children understand what had happened.

Maybe I realized that I didn’t understand what had happened, either.  The world was upside down, sideways – wrong.  And I lost all will to share, to write, to do anything but get up in the morning, make it through the day, and go to bed.

The world is still wrong, but we are settling in to our new normal.  We love decorating our cute little (really little – tiny) place, and we are making a roadmap for our future.  I am excited to write again and look at what lies ahead for us.  I have come back from sabbatical to jump into my midwifery practice again, and that is glorious.  Welcoming new life into my hands is the best feeling in the world, I promise you.

There is still a whole pile of estate stuff to do (I hope it’s done someday), but it’s manageable now that the house part is over.  There is a light at the end of that tunnel, at least. (people, make your arrangements, and use an attorney – it is SO HARD for people after you are gone if it’s not done right.)

And please remind me to redo mine when this is all over.  I have two more kids than I had last time I did up my paperwork.

So, I am coming up for air, as the title says.  Air is good, light is good, life is good.  I wonder what is coming up next on our little yellow-brick road?  We shall see.

what do you say to someone who is dying?

Midwife for the Dying. Amazing post. I am a midwife by profession, and have often made this correlation. We need help coming in, and help going out.

wordhavering

Not more than you should;
Not less than is needed.

And the wisdom to know the difference.

Sometimes there’s nothing to be said at all.
Tears will do nicely.
A quiet sitting by can be the best medicine of all.
Especially for those who doubt their own grasp of wisdom
in knowing the difference.

Sometimes black humor will do wonders.
Laughter – to tears, through tears – can provide precisely
the hand-hold needed
to climb the sheer face of terror
and assault dark uncertainties.

Sometimes it’s the foothold
of a poem,
a song,
a reading.

Sometimes it’s a prayer.
Not performed,
but felt
groaned
oozed.

Midwives for the dying, we are,
for what is death but
birth?

To avert our eyes
to fidget
to nervously shift one foot to the other
to pretend that we’re not staring at death
is like pretending a woman is not really in labor as…

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Oregon, More Baldness and a Raccoon

Mom grew up in a small town called Payette, on the border between Oregon and Idaho, on the Idaho side.  As a child, she would frequently travel with her family to the Oregon coast, where, in good times, they would rent a house on Depoe Bay.

In the year after Mom was diagnosed with breast cancer, there was so much going on that we didn’t really have time to think.  She underwent aggressive chemotherapy in advance of her double mastectomy, to shrink the cancer down enough to even do the surgery, as it had invaded the skin of the breast.  As a side-effect of the chemo, she was hospitalized for multiple pulmonary emboli, as well as some other fun stuff, such as pneumonia, kidney stones, and life-threatening leukopenia (very low white blood cell count).  Add to that the fact that I was starting up my new practice in Colorado after our sudden move to care for her (and the accompanying lack of income), and there wasn’t much time to think about anything else.

But after that first intense year, her cancer was knocked down to almost nothing, and Mom was feeling pretty good.  My practice was starting to grow, and I felt some freedom with funds, so I began to think about how we could make good use of this time with her.  I had a gap in client due dates in October of 2012, and I decided to book ten days in a beach house on the Oregon coast.  The trip would be a total of three weeks, including a long stay in Mom’s childhood stomping grounds in Idaho.

In the months leading up to our trip, she continued to get checkups and scans.  Most of that year, things went fabulously, and we were very optimistic.  Right before we left for our trip, though, a PET scan revealed that her cancer had spread again.  Mom was devastated that she would have to have chemo again, and resisted her doctor’s urging to start treatments before our trip.  After much family discussion, we agreed that a month’s delay in chemo was too much of a gamble with her aggressive cancer, and so she got her first dose right before we hit the road.


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In these two pictures from Payette Lake, you can tell that Mom wasn’t feeling as awesome as she could have been, but she had her hair back, and we were having a great time.  She loved road trips, and she was handling the long hours in the car with no problem, while we talked about anything and everything.  This was about a week into our trip, and the side effects of the chemo hadn’t really started yet.

This was the view from our living room in the beach house:

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Mom could not believe that this whole house was ours for ten days.  Her brother and nephew, as well as one of my sisters and her family, stayed there with us.  We had a glorious time, with Mom leading the way on a tour through all of the places she’d loved as a child:  The Sea Lion Caves, whale watching at Depoe Bay, the Newport bay front and eating at Mo’s.

Soon, though, the chemo started to catch up with us, and Mom’s hair began to fall out again.  And so, one of those precious nights in the beach house was spent in tears, as we all sat in the kitchen and I shaved Mom’s head again.  She was heartbroken to lose her hair again, and we were heartbroken to face the unspoken truth that, despite the optimism we had experienced earlier in the year, the cancer was here to stay.

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In this picture, Mom is holding her grandson, my Emmett, wearing the happy clothes she had purchased in Depoe Bay (she loved color).  You can tell she wasn’t feeling well, and she wore the hat because her hair was gone.  Much of the remaining time in Oregon was spent sitting on this couch, looking at the ocean through the picture window, enjoying the wood-burning fireplace, and practicing visualization exercises for her restored health.

Here’s where the raccoon comes in.  Let me preface this by saying that Mom had a really dark sense of humor, and as horrible as what I am about to tell you is, she thought it was hilarious.  There was a raccoon that lived around the beach house, and we had to lock our trash up in a special box outside so that the darn thing wouldn’t get into it.  Unfortunately, on the evening we shaved Mom’s head, the children took the trash out, and while they did lock the doors on the box, they failed to put the trash bags in the bins, and instead left them on the floor of the box.  When we emerged the next morning to go about our day, we found that said raccoon had stuck its evil little hand under the doors of the box and had ripped open the trash bags.  Our trash was all over the quiet road in front of our house.

Including Mom’s hair.

OMG!  I know, the horror.  Yep, it was pretty much as bad as you think it could possibly have been, crawling around, picking up bits of my mother’s hair from wet Oregon asphalt.

Luckily, we were comforted by the sounds of Mom laughing uproariously in the background as we suffered.

She’s probably laughing right now at the memory as I write this.  I hope she is.

No Words

This post is kind of a non-post, I suppose.  I realized today that it has been two months since I last blogged, and I am writing to let you all know what has been happening in these intervening weeks.

I believe I have mentioned in previous posts that I had begun the process of packing up my mom’s things.  This endeavor evolved into the decision to sell her house.  Being the pragmatic, motivated and energetic person that I normally am, I met with our attorneys and decided that this was the most logical course of action.  Though we are living in said house, and have some emotional attachment, of course, we have moved many times, and I truly thought it would be no big thing.  A month or so, and we’d be out.

That was in August.  We finally finished packing up the house in October.  I cannot even begin to tell you how hard it was to pack up the house of a loved one.  It was all-consuming, drained every ounce of time and energy that all of us had.  We cried every day, we worked from waking to bedtime. Some days, I got a reprieve in the form of seeing my prenatal clients or flying out the door to attend the birth of a baby, but most days… it was just this continuing march through what became near-despair, hoping there was a light at the end of the tunnel.  Forget time for writing, even if I had had the spirit to do so.

Sounds dramatic, right?  Well, the clinical explanation is clear:  I didn’t see my friends enough; I didn’t get enough sunlight; I didn’t get enough exercise; I didn’t eat right.  These things alone can drag you down.  But more than this, the daily question, as we were touching all of Mom’s things, packing away her treasured possessions, changing the quirky things she loved about her home with paint and landscape work – were we doing the right thing?  To sell this house, this place that had held so much love and so many life events.

In October, we got our reprieve.  We took our annual trip to a beach house in Lincoln City, OR, to celebrate Mom’s life.  I have a post in progress about this trip.  When we left for Oregon, we joyfully (well, maybe not joyfully, but with so much relief to be done!) put her house on the market and drove away, counting on, in this hot market, being under contract when we returned in three weeks.

Ha, ha.  Just kidding – we are back in Colorado now, and back in the house. No one is interested, so far, in undertaking the updating that needs to be done.  We live in an affluent area where people kind of expect to have it perfect when they move in.  We are moving the price all around and doing more work on it, and struggling with the same questions.  Are we doing the right thing?  Should we just price it low to sell and move on?  Or should we keep it?  Around and around in circles.  Oddly, this is the most stressful period I’ve experienced in years, even in comparison to Mom’s death. What makes it so?  I think there are just too many choices before me, too many decisions that rest upon me.  Though I know I am so lucky to have these choices, I can’t help but think how much easier it might be to just have one option.

Perhaps the difference is that death doesn’t leave us a whole lot of options.  We simply have to ride the train to its inevitable end the very best way we can.

The Club

This afternoon, I attended a funeral service for the mother of a friend of mine, who passed away suddenly last week.

It was the first such service I have attended since Mom’s death, and I was, frankly, quite nervous about going.  Historically, I don’t do well at funerals, anyway, and usually end up sitting in the back, trying not to make a spectacle of myself with my audible sobs.  I usually carry my own cushy tissues so that my nose will be comfy and I won’t hog the box provided by the funeral home.

Today, I navigated the experience much better than expected.  In fact, much better than the last several funerals I’ve attended.  I wonder if it’s because I cry all the time these days anyway?  Maybe pent-up grief isn’t bursting to get out at the moment.  I did cry today, but I wasn’t wrecked for the day, and was able to talk to my friends and be functional.

As I am watching my friend walk through this experience, I imagine that she might be feeling similarly to how I was feeling 8 months ago.  I remember distinctly the first ten days being surreal, and feeling almost as though I had the flu.  I remember how hard it was to grasp the realization that I no longer had a mother.

Disclaimer: I understand that life and relationships are complicated, and this may not be your personal experience.  But, as a rule, there is no love like the love that a mother has for her child.  I am certain that there isn’t a greater pain than losing a child, as the love is so powerful.  But, I have come to believe that losing a mom, while, sadly, not an incredibly unique experience, carries a special kind of pain that bears some deep consideration.

When my mom died, I was not surprised to find that I grieved.  But I was surprised by the void that was left when I realized that she wouldn’t be texting me at two a.m. when I was out delivering a baby to make sure I was safe.  That I didn’t need to poke my head into her room and let her know when I got home.  Honestly, before she died, I found the fact that I had to check in with my mom at the age of 37 a little annoying, but now that I had no one to check in with, it felt very lonely

Because, you see, there is no one that will ever love you as much a mom. We were a part of our moms.  We exist because we grew and were nurtured in our moms’ bodies.  There is evidence that our mothers carry our cells and we may even carry her cells in our bodies for the rest of our lives after she is pregnant with us.  There is no one who will look at you and only see love, and not your flaws (okay, your little baby or toddler might look at you like that, but once they hit a certain age, your perfection will diminish.)

It’s a lonely feeling to realize that the person who cared the most about whether I was safe and whole is not here anymore.

I am not saying this to be a downer, truly, but just to illustrate the significance of this club so many of us are in, or will join at some point. Until I was in this club, I didn’t have any idea what it really meant.  I still might not know, but I’ve had a little bit of time to sit with it now.

Losing a mom is a special loss.  When I lost mine, friends who have been in the club for a while hugged me and looked at me with knowing in their eyes.  This is a loss that we will feel lifelong.  This is a loss that will visit us on holidays and when milestones come and go.  This loss will be felt when we are alone, hurting or scared and need the comfort that only a mother can give us.

Today, I hugged my friend and looked at her with this knowing in my eyes. Tonight, I am going to think about her and wish for her comfort as she settles into this new life.

And I am going to think about moms.  About their vital contribution to our existence, our formation as humans, in both the physical and emotional sense.  About their love, hugs and snuggles, nagging and pestering.  Their perfection in their imperfection.

And I’ll cry a few more tears, both happy and sad, for all of us in this club.