Get in the Picture

When we were planning Mom’s memorial service, we struggled to find pictures of her.

Throughout Mom’s life, she was never comfortable being photographed. There are very few childhood photos of her remaining (she was kind of a chubby kid, she said), and through my whole life, I recall her waving the camera away, saying she was “too fat”, or had “bad hair”, or “I look so bad in pictures!”

And now that she is gone, we only have, maybe, twenty or thirty pictures of her throughout her life.  I dearly hope we find more as we keep going through her things.

My mother was a beautiful woman, but that’s not the point.  She was our mom, and no matter what she looked like to herself or to the outside world, she was beautiful to us.  I’m a tiny bit angry, actually, that her low self-image robbed us of the photographic memories we should be poring over now, and yet, I am leaving a similar void for my own children.

I am not a natural picture-taker to begin with, perhaps because it just wasn’t something that was a big part of our lives when I was a child.  I am ashamed to admit that I didn’t take enough photos of my first two kids when they were babies, and there are nearly no pictures of myself from my twenties.  Now, I am in my late thirties, wondering why on earth I didn’t have more pictures taken when I was young and gorgeous.  Now that I am older, with more lines and sags as the years go by, I constantly have to remind myself: I will never again look as good as I do now – take those pictures!

But feeling self-conscious in front of the camera is a habit that was taught to me from an early age by my mom’s example.  I have likely taught this to my daughters, as well, but I am trying to turn it around.  Thank goodness for the smart-phone that lets me snap picture after picture of my beautiful kids and post them to social media sites and my blogs to hang on to for me.  Sharing these photos of my kids with the world doesn’t do anything to get myself in the picture, though.  I am always comfortably behind the camera, like so many other moms.

My friend Jennifer McLellan, creator of the blog “Plus Size Mommy Memoirs” wrote this post on this subject http://plussizebirth.com/how-to-look-perfect-in-a-picture/ and it kicked off a wonderful thing called the “Capture Motherhood Campaign” . I saw her present on this topic at the Denver MommyCon this past June, and her opening words asking us what our favorite childhood photos are moved to me to tears so instantly and powerfully that I almost had to flee the room.

Of course, our most treasured photos are not the ones of ourselves, but the ones with our loved ones in them.  My most treasured photos are those rare ones that my mom is in with me.  Like this one.

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And this one, from just a couple of years ago, when she was undergoing chemo.

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My heart breaks that there aren’t many more like this, and that there are precious few photos of myself with my oldest children when they were little.  But I make the commitment today to put myself in front of the camera with my kids – or without them, doing things I love to do so that they can have these memories to hold on to someday.

Here’s a little start.

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I should probably lose the shades in future photos – I want my great-grandkids to know what my eyes looked like. 😉

 

 

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The Stuff that Makes Up Our Lives

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Today is the seven month anniversary of my mom’s death, and I finally worked up the nerve to start going through her things just this week.

I don’t think I’m one of those people who leaves a “shrine” up for a lost loved one, but it’s kind of happened as a consequence of my avoidance behavior.  I have snapped at anyone who wants to mess with Mom’s room or her stuff until I can “find the time” to take care of it.

But, it’s not that there’s not time.  There has been plenty of time, clearly. It’s just that whenever I looked through the glass doors of her room at the Tibetan prayer flags hanging over her bead and her cute little pug figures, I just couldn’t do it.

This was a room where a human being slept and dreamed and read and wrote in her journal.  Where she wept and feared in privacy after a day of putting on a strong face.  Where her dogs all piled in bed with her, where artwork by the hands of her grandchildren and a framed, autographed picture of her eternal crush, Kevin Bacon, still hang on the walls.

Truthfully, Mom hadn’t slept in this room for several months before she passed.  At some point, she had become too ill to be down in her apartment alone, so we moved her up to the main level and set up a hospital bed in the family room.  We put some shelves up on the wall for her knick knacks and some pictures, and brought one of her bookshelves up so that she could have her precious books and journals nearby.  We kept her bedroom ready for when she would be well enough to move back downstairs.

But, she never was able to move back downstairs.  So, her room stands much as it did a year ago, probably.  It has some boxes piled in it now, of papers and other products of us trying to make sense of all of the estate business.  There are a couple of laundry baskets full of Christmas presents that Mom received but never used, as her steep decline started on Christmas Day, and she died on New Year’s Eve.  There are some birthday presents in there, too, given early, as she would have turned sixty on January 3.  These gifts mostly consist of comfort items, such as warm blankets, fuzzy socks, rice bags, and comfy pajamas, and books and journals.  We often gave her inspirational books to help her keep up the fight.  This time, I had given her a book called, “Dying to be Me”, about a woman who had a near-death experience due to cancer, and had returned to health.  It sits in the basket, new and unread.

I decided, this week, to at least go through and start sorting her things into categories so that my sister, Bree, and I can look at everything together and decide what to do with it all.  It seems barbaric to give away these things, these items that Mom liked and loved and used.  Sure, we will keep the things that hold sentimental value for us or that we knew were particularly special to Mom, but we simply can’t hang on to everything.  I wonder who will use these things when we give them away?  Who will enjoy all of her Denise Austin DVD’s, her weird snowman cookie jar and her vast collection of self-help books?  Not to mention all of the pug stuff. The woman loved pugs.

It also makes me wonder the same things about my own “stuff”.  I look around at all of the things that I have collected over my life, and I wonder what people would do with it if I wasn’t here.  How would people know what was precious and what was just “stuff?” I have the strong desire to sort everything and purge the non-essential things.  These things just create clutter, literally and figuratively, making it harder to see what’s important underneath.

I think, when I go, I might just want to have a wall full of artwork from my grandkids on my walls, a cushy bed that I slept in, with my books and journals alongside it.

Oh, and don’t forget that my autographed copies of the Outlander books are precious, kids.

 

 

The Treatment Plan and Baldness

Shortly after my family arrived in Denver and moved in with my mom on January 1st, 2011, she began her treatment plan.  I, and often my sister Bree, accompanied her to her frequent visits with the Kaiser oncologist, during which we sketched out a roadmap of what the next few months would look like.

You’d think if you had that much cancer in your breast, the obvious answer would be to undergo a mastectomy post-haste.  But, because the cancer involved her entire breast, including the skin, the doctor recommended that Mom begin with aggressive chemotherapy to shrink it before we moved on to surgery.

I should touch on the brief  “no chemo” conversation we had.  As I’ve mentioned before, Mom was pretty heavily into natural health, and she had said more than once that if she were to get cancer, she would likely want to go a treatment route other than chemo, as she felt that the chemicals would do so much harm to the healthy parts of her body and immune system, and diminish her quality of life.  The aggressiveness of her cancer, though, left her with few options.  It was pretty clear that if chemo didn’t begin right away, she would likely be dead within months.  And, I have to tell you, we can talk all we want about what we would do in this and that situation, but when death is staring you in the face, it’s so very hard to say no to conventional wisdom.

So, she began two types of chemotherapy, an oral medication that she took at home, and infusions that she would receive at the Kaiser facility downtown.  For the first couple weeks, we were amazed by how good she felt.  I had never before this been up close and personal to a person in chemotherapy, but, based on anecdotes, I had been expecting lots of nausea and vomiting. and extreme fatigue.  I had been anticipating her being bedridden, and having to have IV’s placed for fluids.  But these things did not happen on this first round.

After a time, though, it became apparent that the treatments had a cumulative effect, and that each time she went in for an infusion, she would feel a little sicker and have lower energy.  But, she was still very functional.  At some point, we began to notice that her hair was shedding a little bit, and then more and more, until one day, all that she had were little tufts of hair that were left in odd places around her head.  We wondered why every last hair didn’t just fall out?  Having those odd ones left made the experience all the weirder.

Mom started wearing stocking caps everywhere, including to bed, so it took a little while before my children realized that their grandma had lost her hair.  My son, Hayden, surprised her downstairs in her basement bedroom when she had her cap off one day, and there was an awkward “naked head” moment.  This was so interesting, because I know Mom had no intention of keeping any piece of her experience from the kids, but I think the side of her that was self-conscious about her baldness wanted to keep this part private as long as possible.

As much as Mom had spoken of being one of those courageous women, boldly going about their daily business with their beautiful, bald heads out in the open for the world to see, like a badge of honor, I think the reality was harder to bear then she had realized it would be.  So, she wore hats. And soon got into a program that helps connect people on chemotherapy with donated human-hair wigs.  These masks gave her the nerve to go about in public like a “normal” person, but nothing could really hide the effects that chemo had on her body.

And this was the tip of the iceberg on the chemo roller coaster that was to come.  Mom was so right about the chemicals “poisoning” her body, but they kept the cancer at bay and began to shrink the tumors.  They also almost killed her a couple of times.

The next step would be surgery.

 

 

 

Self-Care: Just Do It

As a natural health care provider, I have long leaned away from over-testing, particularly from exposing my body to radiation through mammography.  The experience of my mom’s cancer, however, has given me pause and the impetus to research the best way to improve the odds of detecting breast cancer in its early stages.

My mom was a pretty natural lady, too, and by the time of her diagnosis at age 56, she had only had one or two mammograms.  She had not had one in a number of years.  Like many of us, she wasn’t really great about following through with regular well-woman exams, either, and so didn’t get very frequent clinical breast exams.

In her case, I don’t know how much of an impact these things had on her outcome, since she had inflammatory breast cancer.  Unlike most breast cancers that begin with a palpable lump, this aggressive cancer begins with atypical symptoms such as pain, redness, skin changes and swelling.  It can be hard to detect on a mammogram and is often initially mistaken for an infection.  Still, according to studies, regular mammograms increase the rate of survival from breast cancer by 15-20%, so I do have to wonder what would have happened if she had kept those annual appointments.

More significant than all of this, though, is the fact that she didn’t do regular self-exams.  Let’s face it: most of us are pretty bad at remembering to do this.  I know I am.  But this piece is so very important for a huge reason:  we need to be body-aware.  In this society, many of us are self-conscious about the way we look, about our weight or our dimples or our wrinkles or our sags – and we look away from our bodies as we pass the mirror on the way to the shower.  For our overall health, including breast health, we need to become familiar with how every part of our bodies normally look and feel so that we will know when something isn’t right.

This is what was missing for my mom.  She didn’t check in on her body on a regular basis, and so she was slow in realizing that something was wrong with the way her breasts looked and felt.  Later, she reported to me that she had felt soreness under her arm as early as late summer that was bothering her enough that she didn’t want to lower her arm all of the way.  By the time the pain was bad enough to make her finally look in the mirror with her shirt off, the changes in her breast were so obvious that she knew immediately that she had cancer.

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I’m sure you’ve heard about the importance of breast cancer screening ad nauseam, but let me throw a little bit in here about what I have learned.  First, it appears that mammography does have an impact on survival rates.  Being the crunchy person I am, though, I am still delving into data on radiation exposure (which seems to be low).  Also, as a crunchy person, I am a big fan of alternative testing, such as thermography.  I have used thermograms as my replacement for mammograms for many years, but it appears that the data is showing that the best result is achieved when both thermography and mammography are used as part of a regular breast health screening regimen.  Note that this regimen is a departure from the norm, so it isn’t for everyone.  But for interested persons, information on thermography can be found in the references below.

Women with a moderate to high risk of breast cancer, based on family or personal history, may consider adding MRI to the mix, as these tend to pick up on breast changes a little differently.   Ultrasound can be used in addition to other testing, as well, but can be associated with higher false positives when used alone.  Regular clinical breast exams with your health care provider are an important part of monitoring your breast health.  And, of course, above all, we need to do monthly self-exams to be on top of breast changes. Instructions can be found below.

Whatever direction you go with for your breast screening, the take-home message is that we are the caretakers of our bodies.  Our bodies need us to promote health and stave off disease by eating healthy food and being active, and by practicing loving awareness of our bodies during health so that we can spot disease in its early stages. We must do this for ourselves and for our families.

You can find all kinds of info about breast cancer and screening on these informative websites:

http://www.breastcancer.org/symptoms/testing/types/self_exam/bse_steps

http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-042725.pdf

http://www.cancercenter.com/breast-cancer/types/tab/inflammatory-breast-cancer/  

http://www.iact-org.org/patients/breastthermography/what-is-breast-therm.html 

Dreams

Last night, I dreamed that Mom was still alive.  It was not one of those wish-dreams where she was healthy and cancer free, but it was a very real replay of a scenario that we lived through a few times.  She was in a period of relative good health, having beaten the cancer down to almost nothing again.  She had energy to leave the house and move about almost normally.  But even in my dream, it was apparent that this was the top of a cycle, and there was a palpable feeling of foreboding.  Though we all tried, as in real life, to place as much positive energy into our efforts as possible, we always knew that these upswings were likely temporary, to be followed by a crash.  In my dream, I remember wondering how many times we would go up and down like this.

As so often happens with dreams like these, it took me several moments after I awoke to realize that Mom really isn’t here anymore.  These transition periods after waking are so cruel.  As sad as it is for me, having had the normal human experience of losing a parent, I wonder how horrible it must be for people who have lost a child to experience these blissful moments of forgetting, only to have the weight of the truth crush them again and again.

Shortly after we arrived in Colorado to live with Mom, she pulled me aside to talk with me.  At this time, she had begun aggressive chemotherapy, but was still feeling pretty good.  She told me that she wanted me to know that she wasn’t afraid of dying, and that she would be happy to talk with my children about why she wasn’t afraid.  In particular, she knew that my older son, Hayden, was scared.  I am sure she also knew that I was scared, and was skillfully talking me through my fears by pretending it was about my kids.  But she also wanted me to know that, even though she wasn’t afraid, she had no intention of dying from this disease. 

My mom was not a very religious woman, so her comfort did not necessarily come from a faith place.  But she was very spiritual, and she had had experiences in her life that had assured her that death was nothing to fear.  One powerful story she had told me again and again as a child was of the night her own mother passed away, and how she was awakened from a deep sleep by an electric pain shooting down her arm at the moment of her mother’s death.  My grandmother had lived her life in frail health from childhood, and had had close brushes with death on more than one occasion.  Her matter-of-fact account of a near death experience as a child is part of our family lore, and I know it brought Mom much peace around her own grief after her mother passed.  It brings me some peace to know that it brought Mom peace.

Dreams like the one I had last night sort of put the events of these past few years into a surreal light.  Even now, many waking hours since, there is a strange other-worldly fog clouding the reality of what transpired, and I find it necessary on some level to keep reminding myself, “Yes, it all happened.”

Someone told me that about six months after a death, the shock begins to wear off, and a new, strong wave of grief comes.  I wonder if this may be true, as the dreams become more frequent. My kids have begun to speak of their grandma more, of things they miss about her.  They have begun to display some new avoidance behaviors of grief triggers, and perhaps, some new anger, but mostly soft sadness and, maybe, the beginning of acceptance. 

Perhaps this is when we all begin to realize that our waking dream has been real all this time. 

 

What is Important

I come from a family of adventurers – my parents once picked us up and moved us to Mexico with just a few weeks’ notice –  so the thought of turning our lives on end was not scary to me.  And the impetus was strong;  I had known women with similar aggressive cancers who had lived only weeks or months after diagnosis.  I feared that if we did not act immediately, my mother would be lacking essential pieces of her support structure as she faced her deadly foe.  Though the move would bring some logistical concerns, including financial hiccups, we were ready to meet what challenges would come without hesitation.

What I did not realize at the time was that we were living an enormous life lesson during that period of upheaval.  Many people have asked how our children adjusted to moving on such short notice.   As I prepared to leave a job, friends and family that I loved, so, too, did the kids prepare to leave their schools, their friends, their family, and their home.

Right or wrong, my style of parenting includes brutal honesty, and they were fully informed of the gravity of the situation.  Though the problem was complex, the answer was truly simple.  Grandma was very sick and her life was in peril.  She needed us, and they somehow understood that no matter what else we had going on, none of it was more important than giving what we could of ourselves to support her.   This is not to say that there weren’t moments of grief for what was lost in the transition, but they never questioned why it must be so.

The lesson, I hope, is one about rising to the occasion.  About doing what needs to be done, doing what is right, even though it may be uncomfortable. About being human.  This lesson, of course, continued, evolved and grew exponentially as the next three years passed.  During this time, we rode wave after wave of change and emotion.  Excitement as we forged our new lives.  Fear as we faced the unknown.  Contentment as we breathed in the beauty and peace of our new environment at the foot of the Rockies.  Hope when there was improvement in Mom’s condition, and bitter disappointment when there was a setback.  Determination as we endeavored to experience life fully with Mom every day, and in turn, enriched our souls.

My amazing children stepped up to the plate big time.  They rode the waves.  There were tears, of course, and sometimes anger and acting out (and that wasn’t just me).  But they bravely faced the reality of what was coming with incredible strength.  One of these days, I will tell you all about just how hard things got at the end, but let me assure you, my kids were amazing.  From small gestures to powerful shows of support, I could fill post after post with stories about how amazing they were.

But, back to the lessons.  I hope what they really learned from all of this is that there is value in things that are really hard.  Life doesn’t have to be easy and it can still be good.  Maybe it’s not even supposed to be easy.  We discovered marvelous things through the struggle, and learned how to feel the wonder of life.

I think that last part is something that they had a hand in teaching me.  And we are still learning, of course.

 

 

 

 

Making Room

Wow, this is not the blog I thought I would be writing.

I am a midwife.  I read all of the natural birth and attachment parenting blogs, and I write for birth related publications on occasion.  I have thought for quite some time about how on earth I would write a birth blog that was new and fresh in the sea of fabulous and powerful birth blogs.

Instead, here I am, writing my blog, not as a midwife or a mom, but as a daughter.  And it’s not about birth at all – it’s about death.

Several times every month, I am privileged to touch life as it emerges into this world, surely the most glorious moment.  But as my family and I navigated our three-year journey with my mother after her diagnosis of breast cancer, culminating in the inevitable end of her life, I discovered the beauty in moving through this most acute of human challenges.

This is a big one for me, and I’m sure it is for you too.  Death is the big scary thing.  Losing my mother in her fifties wasn’t even on my radar when I was living in Phoenix a little more than three and a half years ago, working in an insanely busy practice, and raising three kids.   Around Thanksgiving, Mom called me from her home in a Denver suburb to tell me about some pain she had been having in her breast (for quite a while, as it turned out – we’ll talk more about how important body awareness and self-care is in a future post).  She believed she had breast cancer because when she finally worked up the nerve to do a breast self-exam, she could see that her left nipple was severely inverted, and her breast was red, hard and sore.  This news was alarming to me as a health care provider, as what she was describing sounded like a vicious, fast-moving form of breast cancer called inflammatory breast cancer.  When I flew in to Denver in mid-December to meet with her oncologist, this suspicion was confirmed.  She was diagnosed at stage 4; the cancer had filled her entire left breast, her sternum, several ribs and vertebrae, and had spread to adjacent lymph nodes.

So, that’s the scary beginning of the story, but as this blog unfolds, I am going to tell you about how this piece of horrible news changed our lives in some incredible ways.  For example, even though my relationship with my mom had been strained in the previous years, my trip to meet with Mom’s doctors led me to make the crazy suggestion to my husband upon my return that we move to Denver to take care of her.  And because this disease was so aggressive, we had to leave right then.  And we did.  If you can believe it, we packed up our home in Phoenix over the next two weeks, and I made arrangements with my business partner to start getting my practice covered.   My husband, myself, our three children, our two dogs, two tortoises and our moving truck pulled into my mom’s driveway on January 1st, ready to begin the fight.

My mom’s name was Marsi, by the way, and she was a beautiful, loving, youthful woman.  I hope you stick with me as I tell you about her and all that we learned about how to do this awful dying stuff.

I think the biggest thing we found out is that it’s not so bad if you don’t have to do it alone.

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