Medical Update Reflections

Janet and Joe in Kuwait, 1982-1984

Everything in life changes, including bucket lists. When I learned I had cancer and struggled through two surgeries, a round of chemo, and another round of continuous chemo and radiation, plus the side effects of it all, I thought, "When this is finished, I'll travel to those places I'd like to see." I had in mind China, India, re-visit Italy and France, but especially, I'll see Seattle (where my daughter Jennifer lives), and spend some time in Tennessee. Since my last post, my bucket list has shrunk.

Yesterday, I learned, barring a miraculous intervention, my time here on earth is fast coming to a close. Now, I have been diagnosed with metastatic pancreatic cancer. My first pancreatic cancer spread cancer cells throughout my body via the blood even before my Whipple surgery. At the time of the Whipple, nothing showed up on the scans, the surgeon saw no signs of metastasis, felt no additional masses, yet the cancer had spread. If they had known that it had spread already, they would not have put me through a Whipple.

Even in March, when I was in the hospital and they were running all sorts of tests to find out why my liver enzymes were elevated and why I was so swollen with fluid, nothing showed up on the scans, or through any of the battery of tests. But now my cancer has shown itself to be metastasized (mass on incision site, spots in my liver, and areas of my stomach lining). When asked what the average life span is of someone diagnosed with metastatic pancreatic cancer, my oncologist said 9-11 months. He has known some to live longer, maybe 1-2 years, and has heard of a few more that have lived longer then that, but some only lived 3-4 months, give or take. Suddenly, traveling to far away places does not appeal.

Charlie (Chuck) 3rd grade

I don't want to spend what precious time and energy I have left, traveling to and fro. I'd still like to see those places, would still like to visit Jennifer in her new city, did get to travel to Tennessee and Alabama, but now, I just want to stay home and finish those projects that mean the most to me.

David (3 yrs) and Jennifer (8 yrs)

Roger, Virginia, Linnea, Richard, Patty, Janet, Bob

How am I dealing with this latest news? Though I highly suspected this was the case, though I know no one really knows the day or the hour, hearing the average time for those with pancreatic cancer that has metastasized is 9-11 months makes me incredibly sad, in particular for my children, my grand-children, my family, my friends and for Joe. I wish they didn't have to go through this. I wish I could spare them the heartache. I'm not fearful. Grace surrounds and infuses me with love.

I'll still pray for healing. The oncologist said chemo can possibly slow down the progression of the disease, but will not cure it. Only God can do that now. I will start chemo again on Wednesday, 3 weeks on, 1 week off and in two months we'll re-evaluate with CT scans. If at any time it seems like to all concerned the chemo is not enhancing my quality of life, or is doing more harm than good, or is not diminishing the mass or spots, and in fact increasing them, we will stop. I trust that God can heal, but am realistic to know, that for whatever reason, not everyone is healed, and those who are healed will live to face death again. Death comes to us all, sooner or later.

My new bucket list?
Make scrapbooks for Charlie, Jennifer, and David with pics, memorabilia I've collected, and my reflections (hopefully time to make a little one for the grand-kids too
Write reflections on my own life events for my children and family
Keep Babblings updated as I progress
Visit with all I can, simplify, enjoy

Pray for healing but if healing means going "home," then pray grace, mercy, peace, and dignity attend me on the way. Ya'll come see me!


"God of grace and God of glory,
On Thy people pour thy power;
Crown Thine ancient Church's story,
Bring her bud to glorious flower.
Grant us wisdom,
Grant us courage,
For the facing of this hour,
For the facing of this hour.

Lo! the hosts of evil round us
Scorn Thy Christ, assail His ways!
From the fears that long have bound us,
Free our hearts to faith and praise.
Grant us wisdom,
Grant us courage,
For the living of these days,
For the living of these days."
Harry Emerson Fosdick (1878-1969)

Life tends to get in the way of my vision for what comes next. Spring 2011, I can remember sensing something's coming, just down the road, around the bend. I couldn't see it. Didn't know what it was. I just knew it was coming. Being positive, by nature, I, of course, thought that something would be good. It would capture my attention and wing me on to my next adventure. 


Mom had settled into my home, for the most part. I basically put-on-hold teaching, as my stress level could only "handle" having Mom in the home. We had good days and some not so good days, and some days, just not worth mentioning at all. I'd usually call one of my sisters or text my brothers and say, you'll never guess what Mom came up with this morning. But, all in all, life in retrospect, seemed to be running fairly smooth, as smooth as life with someone that has Alzheimer's can.


Then August came around and my world turned upside down. That something DID capture my attention. 


Within the course of a month, I was not only diagnosed with ovarian cancer, but also with pancreatic cancer. Two separate, unrelated cancers. My ovarian (notice how I've owned it...its mine, not someone else's...what does that say about me, I wonder??) cancer seemed to be well behaved. It was borderline cancer, although as my medical oncologist (acquired when I had my second diagnosis) said, cancer is cancer. My GYN oncologist, after removing all my female organs and my appendix, said it would only require a careful scrutiny. No need for chemo or radiation. YAY!! I was elated and ready to get on with my life again. 

I had one concern though. Before surgery, I began to notice a creeping yellowness to my skin and eyes and some other symptoms. By the time my surgeon was ready to release me and remove my staples three weeks post-op, I had dragon eyes, you know those stories where the dragon has piercing, devilishly yellow eyes! My GYN finally looked up (yes, I meant it) and said, "You're yellow!" A blood test confirmed a dangerously elevated bilirubin and elevated liver enzymes. He told me, "get to the hospital, NOW! These are liver failure levels." 


A scan showed a blockage in my pancreas, and after biopsies etc, confirmed another nightmare, adeno pancreatic cancer. A small mass blocked my bile duct, causing bile to spew into my system. The jaundice alerted the doctors of the mass, otherwise, it could have grown undetected until too late for them to operate. All concerned called it fortuitous. My medical oncologist explained how they stage cancers, what they look for in pancreatic cancer in order to work toward a cure. It looked like they found mine before it became incurable.


I couldn't read. I couldn't even pray. I remember sitting up on the edge of my bed in the hospital after getting all this information, alone, softly singing to myself the song I wrote about in another blog, Somebody's Praying: "mighty hands are guiding me to protect me from what I can't see, O Lord, I believe....."  I was in shock, overwhelmed, yet being held by an invisible gracious Spirit of love (God is love). I don't know what I would do without my family, my children, my friends, and my priests. All have gathered around and have been supporting me, and I'm so grateful for their love. 


In mid-October, another surgeon performed a Whipple. He removed a portion of my pancreas, a portion of my duodenum, a portion of a bile duct, my gall bladder, and re-arranged my innards (technically a duodenalpancreadectomy, whipple resection). I wonder what's left?? All professionals concerned informed me, I recovered quickly from both, particularly the Whipple surgery. I have nothing to compare it to, so I'll take their word. 


All I know is, I went from having one alternative medicine doctor to having not one, but four oncologists. From only taking supplements (except for my thyroid medicine) to needing chemo therapy and radiation, in  the course of just a few months time. This cancer was not as well behaved. It is Stage III, with close borders. My oncologists still think, "we can cure this." I'm grateful for their attention and compassion. 

I know that no one leaves this world alive, but would like a bit longer to work on my bucket list, see my grand-children grow up, and accompany my children to mid-life, at least. According to my surgeon, if I make it two years, that will be great! Five years, they'll talk cure. I like what a friend said the other day, "When you wake up the next day after diagnosis, you're a cancer survivor." I'm not ready to say good-bye, not yet. Life and death are not in my hands, though. Control over our circumstances is an illusion. We just don't know what lies around the bend. 


My brothers and sisters have come together and decided I need "to laser focus" on my own health and are in the process of moving Mom to assisted living. She is not happy about it. No one is.



I've been re-watching The Lord of the Rings and identified with Frodo. "I wish the ring had never come to me. I wish none of this had happened." 
Gandalf assures him, "So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us."


So, as I go through this transition time, time between now and whenever my Lord calls me home, as I struggle with side effects of chemo and radiation, I'm living now, but also planning for the time I have left (a good place to be), and hopefully, finishing the bucket list. 

Mama and her Videos

Mama loves to watch videos. She has stacks and stacks of VHS videos and a growing collection of DVDs. The only problem is, with her dementia, she'll begin to look for one video and by the time she has searched not more than half of her stacks, she can't remember which one it was. She is always commenting how she used to have a film but can't find it anymore. She thinks someone comes and takes them, and is sure the ladies that clean our house must be slipping them out and bringing them back. After all, who wouldn't want to watch her glorious collection.

At one time, she kept them in some sort of order, and she continues to try to semi-organize them, but for her that means, putting the ones she has watched on the chair, the ones to be watched on the floor in front of the TV, and the rest somewhere in-between. More and more, I'm finding DVDs and Videos in the wrong cases. My sister borrowed MURPHY'S ROMANCE and when she arrived home, found DALLAS in the case.

I know we are in for a conversation when I hear, "Can you get videos on your computer?" meaning she wants to know if I can look up availability or buy them. Numerous times she has asked me if I could buy THE HIDING PLACE, SONG OF BERNADETTE, MURPHY'S ROMANCE, and LONESOME DOVE, just a few that I either have to find so she knows she already has them (because she won't believe me if I just tell her she does), or tell her I'll order them (hoping she'll forget, until the next time).

Here is how our evening progressed last night:
"What are you looking for Mom?" after she hollered up from downstairs, the familiar, "Can you get videos on your computer?"

"There's another ANNE OF GREEN GABLES video. I only have the first one and ANNE OF AVONLEA."
"Yes, Mom, there is another one, the third in the series, and you have it. You have all three."
The ANNE series is another one we've discussed before, so I know they are somewhere in her collection.

"No, I don't. I only have ANNE OF GREEN GABLES and ANNE OF AVONLEA. I saw another one in an advertisement and I want to get that one."
"You have it, Mom."
"NO, I DON'T have it," her agitation is rising and I have to decide if I want to just tell her I'll order it, or go downstairs and look for it.

My decision made to look, I hear, "I just watched two videos of ANNE OF GREEN GABLES and then two of ANNE OF AVONLEA (part 1 & 2 of each). I DON'T have any others and I want to get them."
"Well, let me look. I think you might."

I find the video case of ANNE OF GREEN GABLES, THE CONTINUING STORY and it has part 1 in it, plus part 1 of LAWRENCE OF ARABIA. After hunting for the other LAWRENCE video (it also has two parts), I find both parts of THE CONTINUING STORY and take it to Mom.
"Here is is, I did find it."
"Are you sure that's the next one? I want all three!"
"Yes, Mom, I'm sure. This is the third part of the series. She is older and married to Gil in this one."
Surprised, she says, "When did they get married?" even though she has watched the series many times.
"In-between the second and the third parts."

After I hand it to her, she looks puzzled and points out, "But this says on the front ANNE OF GREEN GABLES. I've already seen the first one."
I take all three sets and show them to her, "There you are, three, each has two videos to watch."

The title ANNE OF GREEN GABLES is confusing her (and by now, maybe confusing the reader of this blog). She says, "ANNE OF GREEN GABLES, THE CONTINUING STORY should be after the first one, then ANNE OF AVONLEA."
I laugh, "Well, that's not how they did it." With the laughter at their idiocy, her agitation is lessening, but she is not convinced.

"I don't think that's right. I think you're wrong. I want all three and in order."
"They are all there. Here I'll show you."
I stack them in order, reading off the titles one more time.
Having decided, reluctantly, I might be right, she pulls out the two videos and says, "Which one is which?"
I show her, "This is pt 1."
She laughs, "Ok, now put it in for me will you, while you are standing there."

I put the video in, as we laugh, and it starts playing scenes from the first two videos in the entire series as an introduction to the third one. Sigh. I know what's coming next.

"See, I told you, this one is the first one. It has ANNE as a young girl!"
"Just wait,  Mom, it will come. They are just showing scenes from the first videos."

Finally, a scene with Anne older as we get to the beginning of the third part of the series.
"There she is, see she is older, this is the third part. Look how old Anne and Diana are now."

"Well, I don't know. I'm still not sure this is the third one. I think YOU'VE got them all mixed up."
Time for me to go back upstairs.

Journey to Becoming a Reader

Books can be dangerous. The best ones could be labeled "This could change your life." ~Helen Exley

Here I go with an "I wish I had," which is something I rarely do. I wish I had read more when I was growing up. It's not that I was allergic to books, or shied away from the printed page, I loved visiting libraries. Growing up I spent hours perusing the stacks, looking for interesting books to read, then I lugged them home, usually the limit, only to have them sit on my dresser leering at me.

We had a print friendly home too. Mom read to us when we were small. She made sure we received books for Christmas and for our birthdays, and I loved getting them. I honestly did. No groaning, another book, when the all too familiar gift was set before me. I eagerly opened the book package wondering which book I'd add to my own shelf. LITTLE WOMEN, THE FIVE LITTLE PEPPERS AND HOW THEY GREW, MY FRIEND FLICKA, even the BIBLE made it into my collection. I'd open each new book, leaf through it carefully examining the pages, the print, the lovely illustrations (always quality editions), but I didn't read them. I'm not sure why. I tried. There may have been some attention problem, or maybe, from the time I was five-years-old, the box with the cathode ray tube in the living-room captured my attention, more then reading.

Nevertheless, I loved it when my third grade teacher read to us. Other teacher's may have also read, but for some reason, I specifically remember Miss Heaffy reading THE BOXCAR CHILDREN and it set my imagination souring as I thought about how my siblings and I would fare living in a boxcar. Not a literary classic, but certainly interesting to a third-grader.

By the time high school rolled around and those English book reviews were due, I got by, listening in class, reading the book jackets, and skimming for content to quote THE YEARLING, A TALE OF TWO CITIES, and MY ANTONIA. When it came time to review the book as a whole in class, I'd listen so as to be able to regurgitate facts on a test. I can remember thinking during those rehashes, "I wish I had actually read that book." What diverted my attention as a sophomore and junior in high school, besides the opposite sex, were the plays I participated in. My English teacher, both years, doubled as my director and guess what? He gave me grade-mercy because play practice occupied my time after school. I attended another school for 12th grade, and to be honest, blocked the memory of most of the year from my mind. Not my best year.

When I moved temporarily to Boulder, Colorado, twenty-two-years-old, single and pregnant, I packed certain books to take with me from the family shelves. Books made me feel at home. I lived in a one-room efficiency apartment across from the University of Colorado's football field, had no television to watch, no computers at that time, no friends or siblings to distract me, so I picked up one of those books and read it, cover to cover. That was all it took. I became a voracious reader.

I couldn't begin to calculate how much I've spent on the printed word over the past four decades, probably an obscene amount, or how many books I've loaned out or given away. I love sharing books with others, and when I read something I like, I usually want to share it.

Books became my companions, represented home to me wherever I traveled, were my comfort buy when I needed comfort, and opened up new worlds when I felt isolated by circumstances. Books accompanied me wherever I went.

Imagine my sense of horror when my 5th grader came home and told me he HATED to read, nobody read. Charlie taught himself to read by using a set of phonics tapes before he entered school at the age of 6, and had a love of reading that was squelched in school. I needed to find something that would capture his imagination enough to want to read for himself (this occurred as I transitioned from sending him to public school and home schooling, back in early 80s before home schooling became more visible). I didn't want him to grow up not reading as I had.

I can't remember where I read about them as a means to that end, but someone recommended THE NARNIA TALES for reluctant readers. I purchased a set and started reading THE LION THE WITCH AND THE WARDROBE to him. I read through the whole set rather quickly, because we were both enthralled. It not only opened up a new world to him, but also to me. He read the series so often over the next few years, he practically knew every page by memory.

Once we ventured into the world of Narnia, Tolkien and THE HOBBIT seemed like a natural next choice, and then THE LORD OF THE RINGS. They proved to be more of a challenge to read aloud, but we persevered. Tolkien also provided him with plenty of scope to stimulate his imagination. He found SHERLOCK HOLMES on his own and enjoyed sleuthing with Holmes and Watson.

By the time Jennifer turned 5 (Charlie, 14 then), I thought certainly she'd follow in Charlie's footsteps. We tried the phonics approach he had used, but to no avail. The letters just seemed to bounce around and made no sense. I'd try from time to time to help her with reading, but found our best avenue of approach was just to read, read, read. I read everything to her, biographies, books about art, the stars, geography, math (although finding interesting books about math proved to be a challenge). Then too, we read Lewis, Tolkien, but added others, such as Lucy Maud Montgomery's ANNE OF GREEN GABLES (plus all her sequels and EMILY books), LITTLE HOUSE ON THE PRAIRIE series, and Beatrix Potter.

Those are the ones I remember most clearly but again, kept wishing I had read when I was growing up.

At approximately 9 or 10, everything came together for Jennifer. Like a light bulb in her head suddenly blinked ON, she got it. She started her own school work at the third-grade level and just progressed smoothly even skipping 6th. She has always had to work harder because her eyes picked up words from a line below the line she was reading, and math continued to be a challenge, but it never held her back from doing what she wanted to do educationally.

Then it was David's turn (Charlie 19, Jennifer 10); he just started reading at about 5. I read to him as I had Jennifer and never really needed much in the way of effort to help him read. They all loved the original WINNIE THE POOH, but David wasn't that thrilled with Lewis or Tolkien, not growing up (Tolkien came later). We read HUCKLEBERRY FINN, THE ADVENTURES OF ROBIN HOOD, and SECRET GARDEN, JUST SO STORIES just to name a few more. David loved THE WIND AND THE WILLOWS, it was a favorite that was read again and again.

As I read, the children played with Leggos (as long as they played quietly, rattling Leggos was a distraction), or they drew pictures with colored pencils on art paper.

As David entered his teen years, he read less and less. One reason for that, I think, is because he was allowed video games the others didn't have (Charlie reminds me, David got all the cool stuff...Charlie didn't even have an Atari). So I wonder if David had the same problem I had, the movie screen/video screen captured more attention then reading, UNTIL, he discovered HARRY POTTER, actually in his twenties. He is still more visual, enjoys filming, making music, writing, but he has discovered reading for pleasure on his own later, just as I had. He's read the HP series through several times and keeps searching for other books that will equally capture his attention. He told me the other day, he found Michael Crichton's JURASSIC PARK to be interesting.

I'm still easily lured away from reading by the seduction of movies and the computer, but they have OFF buttons, and when I notice I haven't been reading as much, I'll turn off the electronics and settle into a favorite chair for a good read, or two, or three. I read a wide variety of books and with the addition of a Kindle, lugging a heavy book bag with me on airplanes is in the past, thank GOD. I miss not being able to read aloud to the children (someone suggested I volunteer at the local library, I just might). I wish my mother would let me read to her (I've offered, since she doesn't see well and laments not being able to read, with her Alzheimer's following a story is difficult). I'm still discovering treasures on my own, Steinbeck's EAST OF EDEN, Dumas' THE COUNT OF MONTE CRISTO, Hugo's LES MISERABLES, and Cather's MY ANTONIA (finally).

I am SO grateful I read whole books, interesting books to the children as they were growing up, for in the process I found books I wish I had read, but discovered late. What is it they say? Better late than never! What about you? Read any good books lately?

The Choices We Make as Women, pt 3

It's probably a given, but let me express it anyway, I'm thinking here...what constitutes home for a woman often determines whether or not she feels guilty about working or not working when she has children. Our feelings develop when we are young, at least my mom's and my own did, and to the extent we recreate that image in our own homes, that's the extent to which we feel guilty or not.

Mom's family with a few additional extended family members

Mom and Dad tried to recreate the home they remembered from their childhoods, with mom in the home and dad working to support the family. Our dinners, at least before my mother went to work, were in the dinning room, with mom at one end of the large table and dad at the other. We were not to chat until they acknowledged us and if they wanted to say something to one another that we shouldn't hear, they talked in pig-latin. Of course, sly Duros' that we were, we figured out the code.

This scenario changed, after our house caught fire in 1963. An oil furnace heated our large turn-of-the-century two-story home. The ignitor sparked some clothes, and fire shot up the middle of the house. The firemen said the thick black oil-smoke that collected in the second floor and attic could of killed us all, if it had occurred at night while we were sleeping. As it were, mom and my two youngest siblings were home, the others at school, and she was able to get Bob and Virginia out of the house just in time before anyone was hurt. With the seven of us farmed out to relatives, the event created a stressful time for Mom. We, on the other hand, were having a great time, staying with relatives, who treated us like royalty.

The fire became a watershed event for our family.

My mom and dad weren't perfect, what parent is. They had their faults, but it seems, at least to me, that life changed dramatically after the fire. Mom went to work at the hospital, working in labor and delivery. She felt guilty leaving us. She felt guilty life wasn't the ideal she held in her mind. My parents grew critical and suspicious of one another, their arguments became heated and when finally they divorced, Mom felt guilty, guilty, guilty. She tried to keep things as normal as she could, but to this day, she still ruminates about should haves, wish I hads, and if onlys.

It's interesting, probably not for in-laws or for outsiders, but for us, when the siblings get together and rehash old Duros stories, there is a dividing line between life before and after the fire, and certainly after the divorce. The dynamics changed. When still together, Mom at home during the day, worked nights at the hospital and Dad cooked and cared for the kids in the evenings. After they divorced, sisters and brothers stepped up and tried to help mom out with the younger ones by recreating the normalcy they remembered. Neighborhood life continued, just neighborhoods changed, such as playing outside until the street lights came on and in bed by 9 at night on school nights. My younger brother Rick, became the family cook.

We remember these stories and rehash them with fondness, however, when Mom hears them, because her ideal of life, picture the Waltons, never materialized, she hears critical remarks, because that's how her mind translates it all. Mom worries we'll only remember bad times.Though they were bad times for her, for us, it was all part of our growing up, all part of our own memories, our own normalcy, and we could never imagine ourselves saying: "Good-night Patty," "Good-night Bobby," "Good-night Linnea."

As in any prejudice, my prejudice is based on viewing the other (those working women with children at home), without a sense of empathy. Let's be specific though. I don't remember ever feeling that way toward my mom or my sisters who had to work outside the home. I knew their situations, I loved them, I empathized with them, therefore, my prejudicial feelings didn't extend toward them. Nor did it extend toward any divorced woman, or single parent trying to manage a family life with children. It was only those who chose to work, not out of economic necessity, but for the joy of pursuing a career to enhance their own personality. I didn't, couldn't, wouldn't try to understand. I was being judgmental.

Crateva religiosa (Capparaceae) by Eric Guinther

We condemn the other out of our own sense of guilt. What do I mean? Women who stay at home, feel guilty they are not out there making important changes in the world, contributing to society or even to the family coffers. We work hard at convincing ourselves, and rightly so, that staying home IS contributing to society as we seek to raise stable, happy children who will one day make their own contribution. Since I've never walked their path, I don't know the guilt women carry that work hard at balancing a career and home-life, but I suspect they too seek to convince themselves that their path IS contributing to society and raising stable, happy children. Instead of dealing with the guilt, we often project our own sense of inadequacy onto others by being judgmental.

I believe most of us have figured out by now, however, that in or out of the home, we are all working women.

My contribution to society was and continues to be taking care of the family as Joe worked/works to provide. But it's something that suits MY personality, suits my image of family life, and therefore I don't feel it stifles my personality (except my image never included a husband gone half the time, and busy the other half, and that took some major letting-go to arrive at any sort of peace).

Besides, if I'm honest with myself, by homeschooling my children, that fulfilled another area of my personality, the learner, the researcher, the writer. I am a mother, I am a caregiver, I am a writer, THAT's what I am. For other women, staying home would stifle their personality, and that's something I've had to learn to accept. As the saying goes, if Mama ain't happy, no one's happy.

Does it make ANY difference that I've come to this realization? I think so. Every effort to eliminate prejudice, no matter how small, no matter what form it takes, is good. It sends positive energy into the universe and peace to the individual. Every effort to treat one another with compassion and understanding counters the negativity so prevalent in today's society. Then too, as women we need one another. We don't need to be judgmental toward the other, toward a woman living her life on her own terms, because of who SHE is. It's her individual decision, as a human being, made in conjunction with her own and/or her family's needs in mind. Therefore, let us support our individual efforts to be who we are, in our own sphere of influence, at our own moment in history for the good of us all. Fini.

The Choices We Make As Women, pt 2

 © Marie-Lan Nguyen / Wikimedia Commons

In an earlier blog, The Choices We Make As Women, admitting my private prejudice, I wrote about my evolving thoughts on the subject of women with children, who work outside the home. Just to clarify, I've always believed that a woman who works outside the home should receive the same pay as her male counterpart. Pay should always be based on job performance and competence, not sex, religion, ethnicity, or even a person's size, as we're being told today (over-weight people earn less). A manager's prejudice or preferences shouldn't enter into the equation in a perfect world. Unfortunately, we don't live in a perfect world.

For me, the unfairness of the job market quickly manifested itself soon after I entered it. As a young woman, I worked for a wig warehouse and trained a young man who eventually took my place. When I discovered I was pregnant and informed my boss I was leaving (single, I moved briefly to Colorado, long story), he thought it was because I learned they were paying my soon-to-be-replacement more money, after-all, he was about to get married and would be supporting a family.

In retrospect, I believe they were afraid I would report them for unfair labor practices and were trying to smooth relations. I had too much on my mind at the time to concern myself with what I was hearing. I was obviously qualified to train him for the job, but I was worth less to them, because I wasn't the head of a family (little did they know). It's amazing, after 40 years, I still hear comments made along the same lines and despite gains in a number of higher paying job markets, women's earnings, according to a recent Forbes magazine article, has stalled at 80% of their male counterparts. It boggles my mind and infuriates me on behalf of my daughter, grand daughters, and other female family members. [Access Forbes article here]

My daughter, Jennifer

Though Mom belabors the point about women and work, my grandmothers are mentioned repeatedly in conversations. Mom doesn't make the connection that despite the fact they would have loved to stay home and continue their domestic lives, and despite their limited marketable skills, finding themselves widowed, each worked outside the home, albeit for a relatively short period of time.

Grandma Fried

In another blog, I mentioned my Grandma Fried's prayers and the comfort she gave me. [Somebody's Praying] My mother's mother, Grandma Fried lived with us when I was a little girl until just before she died of a heart attack. Having a Grandma in the home feels natural to me; it feels like home. It's one of the reasons taking care of an elderly couple when I arrived in Tennessee seemed like a natural fit, and opening my home to Mom was always on the agenda, should she need a place and I had the means.

Grandma Fried, according to Mom, was a staunch Methodist. She didn't dance, or drink alcohol, and attended Church three times on Sundays. She married a card playing Grand Mason much to her parents' chagrin, I surmise. Grandma Fried attended well to her household of three daughters and one son during the day and always bathed and changed from her house-dress into something more presentable when Grandpa Fried arrived home from work in the evening. She met him at the door with a kiss.

Grandpa Fried

Grandpa ate supper with his suit coat and tie on and the family sat at the dining room table. The children didn't speak unless they were acknowledged, as the adults conversed about their day (for better or worse, times have changed). Grandpa was the head of the house. Grandma ordered groceries from the local grocer and Grandpa paid the bill monthly. Grandma didn't know how to write a check, didn't know anything about insurance, or the business end of running a household. Grandpa took care of business issues and Grandma the home, until he died in 1939 at age 59, leaving Grandma and Mom feeling lost.

Grandma and Mom (14 years old) moved in with relatives and were carted off to California, for a few years, before coming back to Nebraska where my mom met my Dad [Driving Ms Nancy]. Mom felt Grandma's pain, having to rely on relatives, and determined she would never place herself in that predicament. It's part of the reason she rages so, at times, about her current status. It's really a fantasy, however. We all rely on one another, certainly some times more then others, but we are interdependent creatures, living lives of perceived independence.

Nancy and Bob, November 22, 1945

They were still living with relatives when Nancy Jane Fried, of Swedish, French, Holland Dutch descent, married Robert John Duros (both 20 years-old), son of a Greek immigrant and a Bohemian transplant. Grandma depended on relatives for a place to live, which is why she spent part of my childhood living with us. She finally found a job working at Goodwill Industries, and Mom recalls the day her mother came home thrilled someone hired her. Her only options at the time were non-skilled labor and living with relatives in order to help provide for herself and my mom. At the time, only about 11% of the workforce were women.

Grandma Duros

Grandma Duros, Albina Hudrlik Holik Duros, lived to be 97 years-of-age. Mom is fascinated with Dad's mother and comments on the fact, in many conversations, that she lived so long. Grandma Duros was a little Bohemian woman, who moved to Omaha, Nebraska from Corsicana. I don't know a lot about her life in Texas. My imagination certainly has come up with several scenarios (and one may find its way into that novel I'll write before my demise), but in the end, we don't know much about her life pre-Omaha. According to Mom, she experienced such a hard life, giving birth to all ten of her children at home. My Uncle Jim wrote that she kept her children well fed, at times using a coal burning stove, and clean, though for years they had only well water and no sewers. She never owned much in the way of material goods, but what amazes Mom is that Grandma Duros was so grateful with so little. Maybe that's one of the secrets to her longevity: thankfulness.

She traveled with three small children under 6 years-old, with her mother to Omaha after her husband died. She couldn't have known what was ahead of her, she only knew she had to find work. Her sister lived in Omaha, which probably helped them make the decision to move. Upon arrival she hired on at a boarding house, and helped support her three children using her skills as a cook. At that time, even fewer women were in the workforce, about 5%. According to family legend, that's where my Grandpa met her. At the turn of the century, in South Omaha, Union Pacific Railroad and the Stockyards hired groups of Greek immigrants just off the boats, to repair the rail lines and work in the packing plants. Grandpa worked as a mail handler for UP, after working briefly for Cudahy Packing Plant.

Grandma was born in the US, but Grandpa jumped ship before reaching New York harbor and lived here illegally until about 1940, when a number of illegal immigrants were given the opportunity to become US citizens. It must have been frightening for them, to live not knowing if they might be separated and he, deported. Family legend states my Greek Orthodox Grandpa proclaimed in his thick accent when he met her, "She can cook, I'm going to marry her." Grandma said she didn't love George when she met him, but grew to love him, because of his care for all the children and his devotion to her.

We lived in Grandma and Grandpa's house (they lived in a small building behind the house, a garage Grandpa rebuilt into an apartment) when I was between 2-4 years old. I still remember Grandma calling me to the little house to hand me homemade bread, fresh from the oven with clumps of fresh butter on top. Oh, how I loved homemade bread, something I miss on my gluten free diet. Gluten free just does not taste the same. In the early afternoons, I'd sit beside Grandma as she shelled peas, or broke green beans for the day's meal or to can for later use. It was shaded and cool on the wooden bench beside the little shingled house out back. I don't remember saying much, I was quiet, I think, but I do remember the feeling of being close to such an earthy woman and feeling important to her, a memory close to my heart. A railroad track lay beyond the garden and the sound of a train whistle today, produces a sense of longing. I do understand my mother's feelings of longing for home.  

Basically domestic women, thrust through circumstances and no choice of their own, into the strange world of working outside the home, when there were few options for women in the work field, both women did the best they could with limited skills. Their lives left an indelible mark on my own.

To be continued....

Taking Care of Me

When Mom moved in with me in 2008, I was finishing my Master's thesis and lecturing at the University. Getting adjusted to Mom being here, teaching, and the pressure of getting my thesis committee ready, pushed all thoughts about my own health issues to the back-burner. I'd been telling myself, since I moved to Nebraska from Tennessee in 2002, I'd work on my health, right after I finished the semester. Then it was the next semester, and then the next, and before I knew it, 6 years had passed and I was still procrastinating. I'm good at it, procrastinating that is, especially when it comes to my own health.

As Mom's cognitive abilities started declining, I read more and more about caring for loved ones with Alzheimer's. I needed help to cope with the strangeness of it all. One of the things I read repeatedly was that often a caregivers' health will decline because of the stress of caring for someone with dementia. Reality hit me. If I didn't do something, I would be in trouble in a few short years. The anticipation of caring for Mom, however long that might be and difficult, focused a floodlight on my own health. I grew more aware of, instead of dismissing, how I was feeling.

I noticed my recall was not as quick, answers I KNEW in class were not coming to mind, a general fogginess set in, I couldn't concentrate, and I was tired all the time. I laid around the house, took naps when I wasn't at school, and most days woke up calculating when I'd be able to return to a prone position. As a matter of fact, if I wasn't in the lounge chair grading papers, I was lying on the bed or on the couch. My weight held steady at FAT, neither up nor down, no matter how little I ate. I generally felt lousy, but my biggest complaint was an overall feeling of inflammation. I had joint pain, plus this generalized l inflamed feeling that sometimes sent me to bed wondering if I'd be able to continue. I vacillated between not taking anything and consuming several over-the-counter pain relievers to get through my day. I felt stressed and maxed out just getting up off the couch, let alone dealing with Mom's ups and downs.

Typically, over the past decades, I've focused on my weight, reducing it through diet and exercise as a means to feel better. Exercise always helped in the past, but how do you exercise when you hurt to move, and you have trouble just getting through the day? My weight is a symptom of my health issues. Losing weight would improve my health, but since it is not the sole issue, to focus only on losing weight was not going to improve my overall health and well-being. I knew this instinctively. I needed to concentrate on wellness in a holistic way, physical, emotional, spiritual. No one was going to take care of me, but me.

Physical:
I found a doctor who listened to me. Dr. Patricia Ryan [http://www.centerforconscioushealth.com/] sent me forms to fill out before our visit. She took a lengthy history, including asking for info about my health issues for each decade of my life (try to remember what sort of illnesses etc. you experienced when you were 2 years old), a lengthy current symptom survey, asked for info about my lifestyle (travel, etc). She queried me about my circumstances, even had me list various products I use on my hair, on my body, in the house, all by product name, just to name some.

In a ninety-minute visit we discussed what my possible issues were and she designed a plan to help me deal with the inflammation short of any tests. She listed several tests that would help us identify my specific issues and I decided to partner with her to work on what she found. Osteoarthritis (moderate to severe in right hip), low thyroid, heavy metal toxicity, hormone imbalance, food sensitivities (soy, dairy, eggs, gluten), a Lyme family bacteria hiding in my body (DNA test), and some bad bacteria in my gut (I've traveled a lot), added to a general systemic inflammation and contributed to the fatigue and pain I was experiencing. It all encouraged my body to hold onto fat, which ALSO increases inflammation.
Without boring you with the minute details, among the changes she suggested:

• eliminating offending foods (along with general common sense dietary tips, which I had already implemented...seeking to eliminate white sugar, flour, add nuts, seeds, good fats, plenty of organic fruits and veggies, drink pure water)
• adding homemade chicken stock (it really is good for what ails you)
• supplements to support my thyroid, liver, adrenals, and digestive tract
• hormone support
• IV Chelation therapy to reduce the toxic metal load in my body
• basic detox minerals and glutithione (powerful antioxidant) to help my body detox                     

Gradually, beginning slowly so as not to overwhelm, over a year-and-a-half, I made changes. The result is the systemic inflammation is decreasing (so far by half), my thyroid numbers are good, blood pressure good, my body's toxic load is lessening, I have more energy, and am experiencing an overall feeling of well-being. Recall is quicker and concentration better. The weight is slowly coming off. I'm exercising, not vigorously but steadily, and include deep breathing and yoga stretches. Plus, I periodically have a massage, not only for detox, but also for stress relief. The day I turned on the music and FELT like dancing, tears of pure joy flowed.

It all helps me cope with mom's erratic behavior and accusations (paranoia), but the physical is only one aspect of wellness. There is also the need for emotional support.

Emotional
Mom and I are linked in this emotional journey. No one fully understands what it's like to live with someone who has dementia. Others in the same boat understand to a degree, but each situation is unique. Mom is very sensitive to moods, attitudes, tones of voice, expressions. Keeping my emotions and attitudes in check can go a long way to helping her cope with her own erratic mood swings, although there is no fool-proof way to keep her mind from building strange scenarios.

I'm human. The tension of not knowing what kind of mood my mom will be in any given moment, can build up in me. Her accusations hurt. The strange stories she develops are maddeningly confusing, and jolt when she confronts me with them as if I should know something about them. So, I take breathers. Mom is not to the point where she can't be left alone for a couple of hours. When I need to get away, I go to a movie, go to a restaurant and sit sipping coffee, reading something enjoyable. I go outside, sit in the sunshine for at least 10 minutes, then move to the shade for another 30 minutes to an hour, with my bare feet on the ground, weather permitting, just enjoying the feel of the earth and sun. Don't laugh until you try it. It's amazing how calming it can be. For more information see:  http://www.earthinginstitute.net/index.php/book

I listen to the birds, read a book, or I close my eyes and just breath. The grand-children stopping by or spending the night, can also add a welcome relief from the negativity that generally permeates conversations with Mom. These are things I can do that help my emotional equilibrium. I also schedule myself mini-vacations to just get away from it all. I'm fortunate I do have family that helps out as they are able. They can't be with mom to the extent I am. Each is dealing with this disease in their own way and to a greater or lesser degree do what they can.

To socialize, Facebook, Twitter, daily connecting with people even if only in 140 words or short bursts, helps me not feel alone. I decided I need to get out and meet people (moving here, school, now mom, I haven't taken the time to build many friendships here in Omaha), so I signed up for a Book Club Meet-up. A Twitter friend told me, after listening to me vent about not having many outside activities apart from Mom, about Meet-ups, i.e. groups for people of like interests that one can join and participate in. I haven't been to one yet, but I'm looking forward to the July meet-up. Just to meet with others and discuss something other then dementia sounds like a good idea to me.
http://www.meetup.com/cities/us/ne/omaha/

I'm sure as Mom's disease progresses I'll have to hire someone to come sit with her so I can get out. I've visited with Home Instead, a service that will provide such care and alerted them that I may need them. I don't look forward to those days, but am committed to taking care of me so I can take care of her. That will be high on my list of needs when the day comes. For more information about Home Instead see: http://www.homeinstead.com/Pages/home.aspx

Spiritual
I'm listing this last, but each of these needs overlap and are intertwined. It is not step one, two, then three. The spiritual enlivens and directs all that I do, all that I am. I have my own faith tradition and read and study to inform my faith. I pray, meditate, and vent.

For years, I kept journals, filled mainly with prayer requests (and answers), thanksgiving, and at times worries. When the "what ifs" descended upon me in the middle of the night, I'd get up, turn on the light, and write them in my journal. Then I read each and crossed out all those what ifs that might never happen (usually the whole list), and go back to sleep.

When I vent, I find holding onto anger and hurt feelings only keeps me awake and agitated, so its best to forgive, for my sake, but also so that bitterness doesn't creep in and taint all my other relationships. Besides, in order to be forgiven, we are told to forgive, right? Forgive us our trespasses as we forgive those who trespass against us, goes a long way toward helping me not dwell on the past, and live in the moment. That's where Mom is, in the moment. Leave others to God. I'm only answerable for me, not anyone else. Sometimes, my vents are directed toward God, sometimes I'll call someone to vent, sometimes I get online and vent to someone who cares enough to listen. Vents help, but in the end, once I've vented, I must let it all go. When those thoughts come, release them by sending out feelings of compassion and love to those that cause me to rant, including Mom.

That's it everyone. That's how I take care of me, at this moment in time, where I am, in this journey with Mom in the world called dementia. I'm always looking for other ways that might help. Have you found ways to take care of yourself in your journey, in whatever world you are in at this moment in time? What are they? Will you share them, that I and others might benefit from the work you are doing on yourself, for yourself, and to help others?

.