Tuesday, September 30, 2014

Yes, I'm the Cemetery Snob

Saints arising from the dead, different than the average person.
I recently learned that I'm a bit of a cemetery snob. I've researched the subject for years, wrote about it, and studied burial methods and what the professors called "outdoor museums," or cemeteries, in my master's studies. So, I know about Christian burials and the tradition of placing the head to the west and the feet to the east in many cemeteries. Not all cemeteries, mind you, follow this tradition. But, my paternal great-grandfather purchased twelve plots in a cemetery that does follow this tradition.

Burying a body to face east is a long-standing tradition that goes back centuries. In Christian belief, this body orientation is never directly referenced in the Bible. But, ancient tradition dies hard, so some scripture was used to validate the continuation of this body orientation, including Matthew 24:27:

For as lightning that comes from the east is visible even in the west, so with be the coming of the Son of Man.

Another reference is found in Ezekiel 43:1

Then the man brought me to the eastward facing the gate, and I saw the Glory of God coming.

And, yet another reference in Luke 1: 78, 79:

...because of the tender mercy of our God, by which the rising sun will come to us from heaven to shine on those living in darkness and in the shadow of death...

Enough for references. You get the picture -- by being buried facing east, a body could be easily resurrected facing the Son of God. Simple, I thought, and very convenient for fast and easy resurrection. But, I learned that many Christians today aren't aware of this tradition. They aren't even aware that many churches were built so that congregations were facing east to meet the Son of God should he arrive on a Sunday morning between, say, 10:00 a.m. and 11:00 a.m. Or, on a Wednesday night. Or, during choir practice.

So, therefore, I am a bit of a cemetery snob. But, I have learned that the funeral home that oversees this particular cemetery where my mother will be buried knows about this tradition. And public works, which oversees cemetery maintenance, also knows about this tradition. I assumed I could trust them, then, in placing stones in the correct positions.

So why did I sense something was awry when I visited that cemetery earlier this year after my mother's death? Dad and I had traveled to talk to the funeral home about the plots, since dad was entitled to two of those plots -- one for him and one for his wife -- as a direct descendant. There were plenty of plots left, but mom and dad decided to be cremated and share one plot. This cemetery allows that practice (not all cemeteries do).

By the time I had figured out the problem, the owner of the funeral home was in attendance, as well as one of the funeral directors, and the head of public works. We all realized that the headstones in our family plots were being placed at the feet of the graves. If I go into details here, I won't have anything left for this chapter in my book. Let's just say the situation was rectified the following day. Since no bodies had to be moved, all was well (the mystery deepens, no?).

Today, my father and I traveled to that cemetery again to view my mother's headstone for the first time. When we walked up to the plots, dad and I looked at each other and burst into laughter. My mother's headstone was in the wrong place. Fortunately, I'm a cemetery snob. I had the funeral home's phone number, and I called and talked directly to the owner. The conversation, in my opinion, was hilarious. At the end, the funeral home owner said, "One day we'll get this right." I answered, "Yes, when all the plots are filled."

Fortunately, mom is at home in her urn on the fireplace mantel. No body had to be moved. All is well for now.

About the image with this blog entry -- attribution is below. Note that the people arising from the dead in this image are saints. Saints, clergy, and other religious leaders are different than ordinary people. They, traditionally, are buried in the opposite direction of the congregation; so, when the resurrection arrives they can lead the masses that arise to face the Son of God. I don't know why, but I keep thinking about phrasing this tradition as an "organized Walking Dead." I'll probably burn for that thought.

"Plaque resurrection dead VandA M.104-1945" by Marie-Lan Nguyen - Marie-Lan Nguyen (2012). Licensed under Creative Commons Attribution 2.5 via Wikimedia Commons - http://commons.wikimedia.org/wiki/File:Plaque_resurrection_dead_VandA_M.104-1945.jpg#mediaviewer/File:Plaque_resurrection_dead_VandA_M.104-1945.jpg

Sunday, September 28, 2014

Off to a Great Start

It's been a hectic week with tons of tasks on my plate, but I'm off to a great start. Outside tending to mom's garden beds and working, I'm also helping dad to downsize his household. That's not an easy task, since mom and dad were married for 60 years. Fortunately, they moved several times, so mom downsized a bit every time they moved. That helped.

Also, I made the nerve-wracking decision to start my Indiegogo funding campaign to pay an editor and to find time to finish the book. The editing will take a good portion of the funds I'm asking for in this effort. This campaign was a month in the making, and I wrung my hands several times over whether or not to do it. But, I firmly believe in what I'm doing. A friend shared this quote last night, and it resonated with me:

"I think one of the big things that holds people back is the sense that they don’t have time to give everything, so what they have to give is not enough. It’s enough. It’s more than enough when you’re willing to give anything."*

I'm willing to give it all, truly. I feel as though my mother and I have partnered happily for the first time in my life as I continue to tell her story about her death and dying.

I'm happy that a few friends so far have trusted me enough to help me in this effort financially -- what a great start! I'm also very, very happy that a few friends have shared this fundraising page among their friends and readers (many of my friends also are published authors). As a result, over one hundred people almost two hundred people have viewed this campaign in the first two three days. Those shares and visits, as well as the initial funds, have helped to keep my efforts on Indiegogo's "trending" front page for a few days.

Please consider helping to keep me on that front page by sharing this effort or by donating at least $5 for a sample of my writing. Maybe, after you read a few pages, you'll believe in this effort, too.

Cancer, caregiving, contentious love
The black and white image is of mom in 1951. The smaller image is of Mom and me the week before she died, May 31, 2014. I wrote the poem in April 2014.

* Thanks, again, to Mara Eve Robbins.

Saturday, September 27, 2014

Taking a Day for Dad

Dad in the Air Force, about 1950.
If I learned nothing else from taking care of mom during her last phase of her life, it was that I also was taking care of dad. Dad was like a deer in headlights when it came to emergency situations. Plus, even though he says he knows how to pace himself, he tends to overdo when it comes to an obsession -- like mowing the lawn. Oh, he has a riding lawnmower, but that thing tends to beat him up like a roller-coaster ride.

Losing a spouse can be one of the most stressful events in a partner's life, especially among elder couples. And, for men, the long and drawn-out final phase of a wife's life can be more stressful than that wife's sudden death. Men, especially, suffer more after a spouse's death, and reasons behind this rationale include the loss of social support or the inability to cope with stress.

Another study [PDF] tends to put other myths about spousal survival to a test. in this study, Deborah Carr discovered that:

...the closer the marital relationship, the more depressed both men and women were likely to be after their spouse died. She also found that surviving spouses who were better off economically, as measured by home ownership, were likely to be more depressed than peers who lived in apartments or retirement communities. "Those who own a home may do worse because they have the added strain of caring for a house," Carr speculates. "They may be more socially isolated, lonely, and even afraid of living in a home alone, compared to surviving spouses who live in apartments and have neighbors close by."

I worry about dad. A lot. Dad and mom had a very close relationship, and mom took care of everything in and around the house, including the bills. Dad had to learn how to do laundry, and he had to re-learn how to balance the checkbook. He also had to learn how to cook, although he always made a mean pot of beans.

But, I worry. It appears that the six-month and eighteen-month marks are the most crucial times. We're still three months out from the six-month mark, which puts him at higher risk, supposedly, right before the Christmas holidays. That juxtaposition alone is a stressful thought for me.

If you've read the introduction and other materials, you know that dad has a heart problem. What I've not mentioned -- except to friends on Facebook -- is that dad was diagnosed with bladder cancer this past February, just four months before mom died. He's supposedly doing well, but he's not in the clear.

I don't want to be writing a sequel about being my dad's caregiver. I hope and pray that dad can survive and thrive through the next year. I'll do all I can to help, but I'll need help in determining what's best for him. Hopefully, this is just another chapter in my current story.

Friday, September 26, 2014

Writing About Death

Last photo of mom and me, exactly one week before she died.
Before mom died, I read somewhere that it might not be a great idea to write about grief and loss when feelings about grief and loss are fresh and unrelenting. I believe I was reading Kim Addonizio's book, Ordinary Genius: A Guide for the Poet Within (2009). I almost hesitated to write about my experiences with mom because of that advice.

That advice was moot anyway, as I had signed up for a memoir writing class a few months before mom's death. Ironically (and I rarely use that word), the first class was held on the evening of the day following mom's death. I forced myself to the call for this distance-learning class, knowing that if I missed the first call, I would consider myself somewhat of a chicken. I could do this.

I'm glad I did attend that class, and every class following for six weeks. The phone calls were soothing for me, as I began to share my experiences as mom's caregiver. And, I think that my participation engendered some trust among the participants, because I was honest about my feelings. Sometimes too honest.

Society has built walls around dying and grieving. I used to collect etiquette books, and each book contained certain guidelines and societal "rules" for grieving, mourning, and funerals. Those rules, or walls, can prevent us from healthy venting about caregiving, death, illness, and even about the fear of encountering those subjects with our loved ones. I know that I was willing to talk about those subjects with mom, but she wasn't ready to talk about them with me or with anyone else.

The last thing mom did before she became too sick to function was to pick out the funeral home she wanted to use, their services for her funeral, and her funeral urn. She made those choices on Wednesday, three days before her death. Dad forced her hand on the issues, and she obliged, finally. I understand her fear and reluctance in committing to this task, especially when she couldn't talk about death at all. Especially her own death. That meeting with the funeral home director was the last coherent act she conducted in her life.

I can write about her death. I can write about her death and my caregiving with a vengeance, but without malice. We need to talk about death and dying. We need to embrace that final and most assured event as much as we do the rest of our lives. We can live with gusto, and we can die with the same fearless intent. We can set examples for our friends and family. We can be vulnerable without fear when it comes to this subject.

I think Addonizio is correct about the rawness factor, that sometimes it's not a good idea to spit out feelings when they haven't been examined or critiqued. At the same time, it might be good (and it is for me) to go ahead and write about what transpired, and then sit on it for a while. That's what I'm doing. But, in going back to re-read what I wrote, I change little. I believe in truth, and I believe in common ground. Death is common ground, if nothing else.

If you could talk about death and dying with your parents, no matter your age or theirs, what would you ask them?

Endnote: The class I took was under the tutelage of Mara Eve Robbins. I highly recommend her course when she offers it. Her website is Process, Practice, Words.

Thursday, September 25, 2014

Taking the Leap, Counting on Friends and Strangers

Mom in 1945. The risk-taker.
This is a very nerve-wracking day for me. I made the decision to go "live" with a fundraising effort that, I hope, will help me finish my book about my experiences with mom and her fatal cholangiocarcinoma (bile duct cancer).

I shared my experiences since day one with my Facebook friends, but that's a safe environment. In fact, it's so safe that I've made many new friends through old friends during this experience, and most of those new friends are cancer patients or caregivers.

I draw strength from all my friends, but it's time to expand that circle. I'll tell you why -- it's because those new Facebook friends have become some of my best supporters and sources of information. So, in expanding my circle to include new readers and supporters, I hope to get AND give back even more.

This society is geared to accept a doctor's prognosis and remedies without question many times. My mother was like that. She rarely asked questions and she never advocated for herself, even though she considered herself a risk-taker. But, after living through her experiences, I had to question why the focus is often on experimental "cures" rather than preventive care. I don't have the answer as to how a person might find out how to detect bile duct cancer or any other chronic disease before it's too late. But, I intend to find out.

I also intend to learn how caregiving can become more effective. When I learned about mom's disease and prognosis, I had little time among mom's doctor visits, caretaking, and taking care of my own business to learn how to take care of myself. I learned how to take care of mom through her doctor visits, and even then directions were fuzzy. I did learn enough to teach mom's home health care and hospice nurses how to take care of mom, since mom's disease still remains on the rare side.

That's a heck of a lot of responsibility for someone who knew nothing about chemo, let along vacuum bottles or heparin.

Although my journey with mom was a fulfilling and strengthening experience for me, it also represented many losses. This is one opportunity I don't intend to lose. I need time to finish this book, and I need your help in this goal. Your gift can help me give back to people who may not even know they need my information yet.

Let's get this show on the road. You can learn more at my Indiegogo fundraising site.

PS -- stay tuned. I have a lot of great gifts and surprises coming from some great individuals in my "team."

Wednesday, September 24, 2014

The Palm of My Left Hand.

I just learned something about myself today. When I'm really tired I tend to prop my head in the palm of my left hand. Witness the first picture that my four-year-old daughter took of me on a Greyhound bus en route from Mississippi to Colorado in 1993. I had been awake for almost 48 hours when she took that photo. I was too frightened to fall asleep while traveling via bus with a four-year-old. I wouldn't sleep for another ten hours.

My husband took the second photo during my birthday in November, 2013, almost exactly 20 years after that first photo. I was one and one-half months into an almost three-month reprieve from caregiving for mom. I had returned home to catch up with work, to try to salvage my garden before winter, and to meditate on what I had on the plate before me. Believe me, it wasn't a bowl of ice cream. I wasn't sleeping well at all.

At the encouragement of some dear women friends, I began to write a list filled with at least five things I was grateful for every day. No matter how tired or irritated or frightened I was, I began writing and posting these lists every morning on my private Facebook page. I started this habit about three months before mom died. At first, I was very self-conscious about my gratefulness. But, by the time mom died, I was in full swing. I even posted five things I was grateful for on the morning she died:

6/7/2014: This morning I'm grateful.

1. I'm so grateful that mom found it in herself to be responsive enough to say goodbye to her sons and her granddaughter via phone yesterday. Those calls, although only less than a minute and mostly unintelligible, were miraculous, joyful, and transcendent.
2. I'm grateful for mom's music therapist, who came and sang and played for mom for over an hour yesterday. He didn't have to make that effort. When he said goodbye to her, he held her hand and kissed her forehead, and mom had the sweetest smile on her face. She even responded while he was here, saying he was "soothing."
3. I'm grateful that I can find yesterday as a stunningly beautiful day, because today is not so great so far.
4. I am grateful beyond words for my loving friends who live all over the world who are holding us in their hearts. I feel that lift, I do. I feel it physically, and it sustains me.
5. It's hard, but I'm grateful that I can find some things today to be grateful for. I hope mom can let go soon.

I don't know what time I posted that list that Saturday morning. I just know I hadn't slept for at least 48 hours. I know I was sitting next to mom's bed. I'm almost positive I was holding my head in my left palm, because I know I was holding mom's right hand with my right hand.

I don't find it ironic that, in both photos, I lost sleep caring for a daughter and a mother. I'm not surprised that I can still bring a hint of a smile to my face despite lack of sleep. Even without those gratitude lists, I've been grateful most of my life. I've always been grateful for friends, relatives, and complete strangers who have held my hand and showed me a way.

Without gratitude, I wouldn't survive. Gratefulness is like the palm of my left hand -- it lifts me up.

Tuesday, September 23, 2014

I Made the Grade on the Garden Hurdles Today

The first three plants to feel the spade.
Yesterday I started on mom's garden beds, the ones that hadn't been tended to in over two years because of mom's illness. Oh, they've been weeded, but the plants (mostly perennials) are overgrown and crowding each other out. It's not a pretty sight. So, I began by tackling the weeds in the front bed, what little were left of them. Then I stood and looked around at that bed and at the three other beds within my eyesight. I had to get serious.

To get serious with mom's gardens meant that I needed another 24 hours to bolster myself. I never, in my lifetime, could imagine myself taking a shovel to mom's beds. I never learned to cook from mom, because she said I made her too nervous in the kitchen. For the same reason, I never learned to garden from mom. I learned everything I knew from library books and from experimentation.

Mom was the Master Gardener.

This morning, I awoke and committed to a little writing. Then, I played around on Facebook and Twitter. I read a few articles and ate some yogurt. Then, I changed into my 'gardening clothes' and went to the garage. I needed talismans, so I donned my mother's old gardening shoes, her new gardening gloves (that she never wore), picked up her gardening tools and the shovel and went back to the front bed.

After pacing and eyeballing everything, I went back inside. I needed to consult with dad (can you sense a bit of procrastination here?). After he confirmed my ideas, I took the shovel, and I dug. And, I dug and I dug and I dug. I dug up all the perennials in that top half of the front bed, separated them, and replanted them. The task took two hours.

I knew what I was doing. I did. And, now I'm over those hurdles -- the hurdle of worrying about destroying mom's garden or the hurdle of her striking me dead for touching anything. It's all good. The garden and I will survive.

Sunday, September 21, 2014

Eliminating Jaundice: The Bile Duct Catheter

A jaundiced patient.
Cholangiocarcinoma, or cancer that begins in the bile duct, is rarely detected until a patient becomes jaundiced. That's because the cancer finally has blocked or destroyed the bile duct. The bile duct is a 4"-5" tube that carries bile from the liver to the small intestine. Really, it's all a tad more complicated than this simple explanation; but, when you lose the function of your bile duct, all that matters is getting that bile out of your system and into your small intestine so you can avoid becoming or remaining jaundiced.

Once diagnosed with cholangiocarcinoma, the attending surgeon might want to try a number of methods to move that bile from the liver to the small intestine, especially if surgery isn't indicated.

One way to temporarily bypass a dysfunctional bile duct is with a biliary catheter, or bile duct catheter or stent. This procedure may be done as part of a cholangiography procedure such as PTC (Percutaneous Transhepatic Cholangiography) or ERCP (Endoscopic Retrograde CholangioPancreatography).

PTC is the ability to insert a catheter via a needle into the liver and, hopefully, through the bile duct and then into the small intestine. ERCP is the same procedure, only done orally. For my mother, the oral method didn't work, as her bile duct was totally blocked, and the only way to insert a biliary catheter in her case was surgically -- the third method. NOTE: Only a small number of bile duct cancers are discovered before they have spread too far to be completely removed by surgery.

So, on the day that she was to have the Whipple surgery, the surgeon couldn't bypass her bile duct by surgically attaching mom's small intestine directly to the liver, because mom's cancer was too widespread (one option for a missing-in-action bile duct). He instead inserted a bile duct catheter that worked for mom for the first time in six weeks.

But, we were sorely unprepared for all the work we would commit to over the next eighteen months with this temporary procedure. And, it is designed to be temporary, or palliative. In other words, the this type of catheter was never designed to replace the bile duct on a permanent basis. The catheter needs to be replaced every four to six weeks, otherwise, the risk of infection escalates. We learned about this infection, which was just one part of the whole bag of symptoms that we needed to watch during my mother's illness.

This catheter extends outside the body and sometimes attaches to a bag worn outside the body as well. This bag collects the bile if the procedure wasn't designed to dump the bile straight from the liver into the small intestine. We learned later that sometimes mom had to wear a bag for the first 24 hours after a catheter change, simply until the catheter began to work as designed -- to suck the bile from the liver into its many tiny holes and carry the bile to the small intestine. Then, we could "cap off" the catheter on the outside and remove the bag, which was a small comfort to mom's comfort as time wore on.

We also learned, after our first experience, that it is imperative to keep the catheter flushed once, if not twice, daily with a saline solution. This flush helps to keep the fluids moving in the catheter and helps to prevent infection. As mom's disease progressed, we ended up flushing that catheter three times per day as her resistance to infection became lower and lower.

The interesting part about our dear bile duct catheters is that, when mom was first diagnosed, only a handful of teaching hospitals throughout the country knew how to conduct this procedure. Within the 1.5 years of her illness, we found that numerous hospitals could handle the procedure. But, not one of them would conduct it the same way, we learned. Not all Internal Radiology (IR) departments study under the same teachers.

But, that's another story.

"Jaundice08" by James Heilman, MD - Own work. Licensed under Creative Commons Attribution 3.0 via Wikimedia Commons - http://commons.wikimedia.org/wiki/File:Jaundice08.jpg#mediaviewer/File:Jaundice08.jpg 

Saturday, September 20, 2014

Happy 80th, Mom

Today would have been mom's 80th birthday. I started out hopeful, thinking that this would be a good day for good memories. But, as the day wore on I realized that I was just kidding myself. By the end of the day -- now -- I feel as though I've been beat emotionally and physically with a heavy wet towel.

I can't find any birthday photos of mom that we might have around here. In fact, I can't even remember what we did for her 79th birthday last year, even though I know I was here. I'm just too overwhelmed to try to find my notes.

On the up side, mom lived longer than most other parents, especially those I know about who died from cholangiocarcinoma. She had a good life, for the most part. At least her photos tell me so.

Chalking this day up as a learning experience.

Friday, September 19, 2014

What I've learned about selling online, thanks to Mom

The scene at my feet this morning -- deciding between Etsy and Amazon.
When mom died, dad was anxious to clean out the house. Mom was a closet hoarder, so her house was meticulous; but, if you open a closet door or a drawer in a file cabinet -- beware! I would shudder to find a drawer that I hadn't yet tackled after her death.

Mom kept things like receipts for a carpet replacement in a house they lived in twenty years ago. Or, she would file away some fall leaves (oak) in a space between car payment receipts and recipes. She was an avid clipper -- coupons, articles, whatever -- some of her clippings made no sense. Others revealed tons of information about my mother's proclivities and dreams.

One thing mom and I had in common was our love for books. Not the same genres, but books nonetheless. Some books were gifts, and I was surprised to find the number of autographed books she collected. I must have learned from her how to handle books, too, because even her paperbacks show little to no creasing along the spine, with clean pages and very little shelf wear.

To make a long story short, I started to resell my books on Amazon a few years ago, and I managed to sustain a 100% seller rating over the years. This rating is definitely to my advantage, because I can ask for a bit more, or even an equal price, and I may sell my book before the person who has a 94% seller rating. I've learned even more lessons this go-round, as dad wants me to sell about 90% of the books that remain at their home.

  1. First, if you have a beef with Amazon, don't take it up with me. Amazon sells more books all around than any other online bookseller. In fact, book sellers like Alibris also sell their books on Amazon.
  2. I learned that I had to apply for a "collectible" book seller rating. In other words, if I had a first edition or first printing on my hands, I wouldn't be allowed to list that book as a collectible without Amazon's approval. Fortunately, since I already had a stellar rating, that issue was resolved quickly.
  3. How do you know you have a first printing on your hands? If you're lucky, the book will list a full number line on the page where you'll also find the ISBN (1 2 3 4 5 6 7 8 9 10). If you're even luckier, you'll have a book that actually states it's a first edition. Those books can make a difference between a worth of one cent and a worth of $10 or more.
  4. Always use the ISBN number to find a book on Amazon to research selling point prices. If you just go by the title, you may end up with too many (wrong) listings. It can be a mess in there.
  5. If the book is older than 1995 and doesn't have an ISBN or other identifying marks (like no image at Amazon), then I may choose to sell the book at my Etsy shop. I've had good luck at Etsy selling vintage books with decorative covers or with unusual topic information.
  6. Buy your envelopes to mail the books in bulk, because it's cheaper. I use bubble-wrap envelopes, because the bubble wrap does protect the books. It's worth the expense, especially when the buyer notes the extra care you took and contributes to a stellar rating.
I may sound a bit clinical about this process, and that attitude is one of necessity. If I pondered every oak leaf or news clipping or book signed "with love" by the author to my mother, I'd never make it through a single day. Going through my mom's things is not pleasant, trust me. But, when I falter, I simply think of my daughter. Would I want her to go through this? No. 


Thursday, September 18, 2014

Testing the Waters, Finding a Cause

Mom at Kure Beach, NC, 1953
I'm not sure who took this photograph of mom when she was at Kure Beach, NC, in 1953, but this photo marks a transition time in her life. She had already met dad and they would marry the day after Christmas that same year. This is one time they were apart during that year between his discharge from the Air Force and their wedding.

Mom already had several surgeries by 1953, including a broken wrist which was set wrong. The surgeons had to re-break her wrist and re-set it. She also had one ovary removed for some reason (precancerous?). Other than these issues, mom was rarely ill.

After mom died, I finally had the breathing room to learn more about cholangiocarcinoma and the causes behind this cancer. What I learned was vague at first. This type of cancer is more prevalent in Asian countries, where it is mainly caused by a common parasitic infection of the bile duct. These parasites, or liver flukes, infect people who eat food that contains this parasite. But, this risk factor is small outside Asian countries.

Other factors that can contribute to the 2,000-3,000 cases per year in the U.S. today include bile duct stones, choledochal cysts, or an ulcerative colitis that affects that entire large bowel creating what is known as primary sclerosing cholangitis (PSC, or type of inflammation of the bile duct). All of these conditions are rare, which can account for the rareness of the disease in this country. But, the numbers of people who are diagnosed with cholangiocarcinoma are rising. Why?

The main culprit, in my opinion, is Thorotrast. Thorotrast is a highly radioactive contrasting dye that was used in x-rays in the 1930s, 1940s, and -- in the U.S. -- through the 1950s. Most other countries stopped using this highly radioactive agent by 1950. Patients in the U.S., however, were possibly exposed to this contrasting agent every time they had x-rays through at least the mid-1950s.

The harmful part about Thorotrast is its half-life. This radioactive chemical stays in the body for about 22 years or more. As it decays, it emits harmful alpha radiation. Interestingly enough, this chemical gravitates to the patient's liver and bile duct. Patients who ingested Thorotrast are 100% more likely than the general population to develop bile duct cancer.

There's no way to track how many patients ingested Thorotrast during its time on the market, but one source states that between two to ten million people worldwide were treated with this radioactive compound. What researchers have discovered recently is that a disproportionate number of people who have developed bile duct cancer were once treated with Thorotrast. These cancers occur, usually, decades after the initial treatment.

This delay in cancer development could easily explain the age factor in developing cholangiocarcinoma. More than two out of three patients who develop bile duct cancer are older than age 65.

Mom was 78-years-old when she was diagnosed with cholangiocarcinoma. She had x-rays, at least two to three of them, before this photo was taken at Kure Beach in 1953. These thoughts are disconcerting for me for a number of reasons, but mainly because she looks like she deserved better. We all deserve better.

Tuesday, September 16, 2014

Looking at a Plate

Fostoria Plate from Wikipedia entry on Depression Glass
"Do you remember this plate?" I asked dad this question when I cleaned out the lower drawers in the living room china cabinet. He didn't remember that plate, and neither did I. It's very similar to the plate pictured here.

There is no story with the plate, so the plate is just a plate. Mom isn't around to tell us about that plate. She can't tell us now how she obtained it, why she kept it, and particularly why she kept it in the drawers meant for special items.

I have learned enough over the past few months to recognize a Fostoria pattern, because mom seemed fond of that company's products. So I know that its resale value is moderate. But, that's all I know. Otherwise the plate means nothing to me, and I know it doesn't mean anything to dad.

I'm guilty of the same sin. I presume my daughter knows all my stories. That's quite a presumption.

Monday, September 15, 2014

Respecting Mom's Wishes

Mom and me, 2005, Chicago
Since mom died, I can sit quietly for a moment or two and I can hear her in my heart. She helps me make decisions. She tells me what to do about some issues regarding her personal belongings and she also helps me find certain things. We have, despite our contentious love over the years, that deep connection.

So, when she said she never wanted a memorial service, I knew she felt strongly about this wish. I knew it in my gut. She had her reasons, and most of them concerned so many dead friends and relatives and so many people who would be under the expense and time burden of travel. Understandable.

Frankly, I don't know how I could have followed through on a memorial service immediately after her death anyway. I hadn't slept for three days or nights before she died. Dad also was wiped out. All we wanted was to be left alone. Just for three days. The only person who disrespected our wish was their former pastor. I wasn't surprised.

Beyond this wishing and hoping, sometimes things happen that are beyond a person's control. Hospice informed us shortly after mom's death that they hold a quarterly memorial service for all the patients who died during the previous quarter. So, we knew that mom would be included in a memorial service in September. Initially, this announcement caused some stress for me, because I wasn't sure I was going to be able to return for this event. Dad was totally dead set against attending, because he wanted to respect mom's wishes for no service whatsoever.

But, as the weeks rolled by, dad and I talked about how much hospice meant to mom. We felt that it might be a good idea if we attended out of respect for several people, especially, who meant so much to mom. Then, we began to ask neighbors and friends if they'd like to attend. A few weeks ago, hospice asked for three photographs of mom for the service, and dad picked the photos out himself (despite the fact that my brother was visiting and he wanted to help). Dad did a great job. The photo shown here is one he chose. My daughter took this photo of mom and me during my master's graduation day in Chicago in 2005. That was a great weekend. We had a lot of fun.

This afternoon we attended that service, which hospice screwed up a bit. They included individuals who had died in August, and they couldn't break those names out of the pack before this afternoon. So, the service was longer than usual, but it was beautiful. Mom loved it. Mom especially loved when her music therapist sang. One of the last songs he sang was the last song he sang for mom the day before she died. It was the Irish Blessing.

Mom's far from Irish, but she loved that man's voice and his soothing nature. I was happy to connect with him again and to thank him from the bottom of my heart.

During the service, I had to walk up to the front of the hosting church's sanctuary and symbolically plant a bulb in a pot for mom (daffodil -- a funny story I'll save for later). When I turned around, I saw everyone who was there for mom standing and holding me in their eyes -- two long church pew rows filled with people who loved mom beyond all sense and reason. Those people were our backbone, our spine. They were the very people who were there with us every step of the way during mom's illness, providing food, running errands, holding hands, talking, laughing, crying, hugging, praying.

And, that was what this afternoon was all about. Mom wanted it that way. I heard her in my heart and I'm glad we respected her wishes.

Sunday, September 14, 2014

Traveling Today

On the road, heading into another round of a few weeks with dad. Our goals: to fix mom's gardens, to talk to a few auctioneers, and to get more things packed and sent to my daughter. Most of mom's things are going to my daughter.

Does my daughter want these things? No. But, she has choices. I'll help her with them. What a burden to be the only blood grandchild.

Saturday, September 13, 2014

Some Advice for Survivors

When I decided to write a memoir about my mother’s cholangiocarcinoma and my time taking care of her, I promised myself I would write my story within the parameters of love, forgiveness, and gratitude. But, this is one time I will defy my own guideline. I want to speak directly to hospital volunteers, other nonprofessionals, and even professionals like ministers or surgeons who feel compelled to talk about their successful experiences with any disease or surgery.

My mother underwent several small surgeries and a failed attempt at a larger surgery in hopes of eliminating the tumors in her bile duct and liver. One surgery, called the Whipple, is particularly intense and can last up to eight hours or longer. Mom elected to have this surgery, since it was the only hope she had of ridding herself of her disease's fatal nature. Dad and I felt she wouldn't make it through the first cut of the knife, considering her weakened condition, but she was determined.

During the thirteen days between her doctor's appointment and her surgery date, mom sought out every thread of hope she could about the success rate for this surgery. Her search for hope was understandable, considering the seriousness of the procedure. But, other people, at the mere mention of "Whipple" or "bile duct cancer" had their own stories to tell. None of these stories boded well, since they were all filled with hope. Let me explain...

If you feel you need to buck up a patient by telling him or her about your own miraculous operation or recovery, just stop and imagine what it would feel like if you had to undergo a major surgery and the surgeon gave up on you. How would you feel if you learned that your surgery was a failure, when so many others were seemingly so successful? My father and I cringed every time someone told my mother about an uncle, aunt, brother once removed, or pet that had undergone a Whipple surgery five or ten years ago and who were living happily today.

Although mom made it through the knife, she didn't make it through the pre-determined eight hour time frame. She knew, after the nurses wheeled her bed into recovery, that she didn't spend enough time in that operating room for any type of success. She had been in surgery for less than two hours. The surgeon decided, after he opened her up, that her cancer had metastasized far too widely for him to help her.

Mom then spent the following week after that failed surgery agonizing over why she failed, like it was some sort of test. She compared her failure against all the success stories she had heard. Granted, she sought out some of that encouragement, but an inordinate amount of that bragging (yes, bragging) was unsolicited.

In sum, my father and I are happy for cancer survivors, particularly those who underwent a successful Whipple surgery and are living a good life today. But, if you want to expound on your success, go tell it to a mirror or to another person who survived what you survived and see if you can one-up each other. Stop talking to critically ill patients about your success. One alternative is to simply wish that patient luck. That’s all. Then, go on your merry way, please. Thank you.

Friday, September 12, 2014

The Master Gardener

One of the reasons I'm returning to the folks' house this weekend is to help sort out mom's landscaping. Mom's work on the yards surrounding the homes they lived in over the years was the main reason their homes sold so quickly. She honed her skills in South Carolina at Clemson, where she took classes and was awarded with a Master Gardener certification.

When the buyer walked up to the front door of that house to look around, dad opened the door and the buyer looked at my dad and said, "SOLD." He was so impressed with the work around the house that the house mattered little.

I can never hope to be the gardener my mother was. For one thing, I'm too wishy-washy. I would leave a plant in the ground, not wanting to disturb it, and it would be swallowed by the plant next to it. Mom, on the other hand, was efficiently brutal. I remember watching her pull weeds for the first time -- I was startled by the ferocity she displayed in uprooting anything that didn't fit into her scheme.

That scene brings up so much garbage that it's difficult to sort through all the implications.

That said, I was proud to introduce my mother to various plants, and I gave her some of mine over the years. The lamb's ears that I provided needs to be separated. The helliobore needs to be moved to a shadier location. Her bulbs all need to be dug up and separated. I have plans, and I hope none of this work takes too much time or effort.

Mom couldn't get into her gardens during the last two years of her life. In spring of 2013, she was too sick, and the bulbs needed separating even then. This past spring, she ordered me to take her to the garden shop, where she purchased garden clogs, gloves, some new tools, and other odds and ends. When she died, those items were still in the garage, all sporting their price tags. She had no energy for the work, and she totally lost interest during the last two months of her life. Even the height of the grass or the deer munching on her ground covers didn't seem to bother her, topics that would constantly spark heated discussions between my parents in the past.

I have no qualms about using mom's garden tools. I've already made them mine. My concern is about saving her plans and her work so dad can use her skills to sell the house when it comes time. Why am I doing this? Because it's in all our best interests.

So say the daffodils, those poor squashed-together bulbous entities that I can hear talking to me from two states away.

** The photo is one I took in 2013, showing the bane of my mother's life -- the deer that would snack on my mother's gardens with impunity. They would eat even those plants that were considered "deer resistant."

Thursday, September 11, 2014

Three months out...

Mom died three months ago this past Saturday. What I know from working at an alcohol and drug treatment center for part of my life (no, that's not on my resume), is that grief comes in waves.  Much like the desire to take another drink or drug, the body also begs to be a drama queen if you deny it comfort and the ability to say, "I don't like this change."

For the most part, the grieving is worse at three days, seven days, and 30 days out. Then, I believe it skips to three months, but that three month one is a doozy. Then, six months, 12 months, and maybe eighteen months. I'll have to check...AA (Alcoholics Anonymous) times their chips in response to the body's desire to go back to that 'old life.'

That's just what grief is about -- the desire to go back to that 'old life,' where you could pick up a phone and call your loved one, where you could meet him or her for a daily cup of coffee, where you could count on that person to be there for you.

So last week, I had a bout of crying that about burnt my eyeballs out of my head. It was the longest, hardest grieving I had done for my mother to date. Then, yesterday, I recorded a voice-over for the book trailer that Michele Laroque is creating for me at Deep River Studio, and I had a couple more rounds of crying left in me. But, these bouts were short-lived, and I was able to go on with a strong voice to talk about what happened with my mother and me.

This is not an easy book to write. It hurts to write about my experiences with mom. But, I want so much for my experiences to help someone else. Now that I'm past the three-month mark, I have about three months before the next big wave hits...I hope to get a lot of writing done by then.

PS -- It ALWAYS helps to have a kitteh in the studio.Michele was very supportive and encouraging, too -- a great experience, really. Now I just need a local musician to lay down an original track for me. Yes, I'll pay. I just believe in local.

Wednesday, September 10, 2014

Not the Beginning, Not the End

There are times when the flow of life doesn't act like a river. Instead, that creative juice seems to shoot straight up like a geyser, only to evaporate. Or the waters seep underground, spreading under the earth's crust to form a renewable resource that can be life-sustaining. This blog is late coming into my project, but it arrives as a progeny of the latter resource...that underground resource that sustains my passion to write.

The picture shown here is of my mother, Joanne, when she graduated from high school in 1951. My mother was diagnosed in March 2013 with Stage IV Cholangiocarcinoma, or bile duct cancer. She died on June 6, 2014, at home. My father and I were with her.

I'm writing this blog to keep my friends, family, and supporters updated on my progress with the book I'm writing about my experiences as my mother's caregiver. I was her primary caregiver, although we used home health care and hospice, too. My mother didn't want me to take on that role for a number of reasons; but, at some point during the end of her life, she realized she didn't have a choice. Neither did I.

Now, I'm ready to finish that book, which is all about facing some harsh realities. What do you do when you realize there's no hope? What do you do when your loved one isn't a "cancer warrior" or a survivor? I plan to offer my experiences in some slim hope that what I endured can help you survive as a family member of a dying loved one. You can survive, even if your loved one doesn't.