Food, Food, Food, and Elvis

 

On 27 January 2014 I wrote, "Two of mom's former neighbors called on her this afternoon, bringing a pineapple, fudge, a baked chicken, bag of sweet 'taters, two baguettes, two six-packs of Boost, two eight-packs of Activia, a bouquet of flowers, and a balloon. They warned us they'll return next week. We gotta eat!"

We had also received a roast and another chicken the day before and we were expecting a pot of chili the next day. So our pantry was full.

And, yet...all my father wanted was "one of those Elvis sandwiches." Mom, dad, my daughter and I had traveled to Memphis to visit my daughter in school in 2010, and we took a sidetrip to Graceland. I don't think I need to say any more. I learned from my mother that the women always serve the men, but it was fun to watch my dad have a blast in the kitchen after mom died. At any rate, I was making the sandwich shown here for dad after our company departed.

My father made numerous concessions to health with his "Elvis" sandwich, though. He wanted rye bread rather than white bread, he omitted the bacon, and he didn't want it grilled like Elvis did. Nor could my father eat as many as thirteen or more of those sandwiches at one time. One would suffice, thank you very much.

Elvis's peanut butter, banana, and bacon sandwich is now known as The Elvis, and it's served on menus across the South. 

In another note, I wrote that mom greeted her friends with her usual southern gracious charm that always made her friends feel so special. "You cannot tell from looking at mom that she's so sick. Cannot tell, especially when she puts on makeup. It's frightening, really, beause there's such a disconnect between how she looks and what's going on beneath the surface."

And that was my life with my mother in a nutshell.

Interventional Radiology Tests My Patience, 2014

I took a few days off from writing this history about mom and her cancer, because sometimes the memories can be overwhelming. Additionally, little happened on the 21st. On the 22nd of January in 2014, I wrote, "I've only been pissed off twice with mom's treatment over the past year and both times my ire has been directed with the sub-par IR (Interventional Radiology) at this hospital."

I hope, sincerely, that much has changed at my mother's hospital's IR since 2014. I know the man in charge either quit or was let go before June of 2014, because mom told me he was no longer there. IR as a practice was first introduced in the 1960s, but became a medical specialty in 2012, just two years before mom experienced their treatments. The departments conducts angiography, angioplasty, embolization, stent placement, needle biopsy, foreign body removal, and more. While IR became a medical specialty in this century, they introducted biliary and genitourinary system interventions, and should have been very skilled with those process by 2014.

That said, my mother had to return to the IR just two weeks after her hospital stay to replace her biliary catheter because someone in IR did not suture her correctly. As a result, mom developed a fever and was in "pain". When she returned from the hospital, she was exhausted. The next day, 23 January 2014, I wrote, "Mom sleeps. Mom's been sleeping for hours. Mom's twitching in ther sleep. She's been sleeping in the easy-boy chair, and I can't get her to wake up enough to get her to bed. I keep watching her chest to see if she's breathing. I may have to sleep on the couch, because I can't bring myself to go to bed, either."

She woke at 1 a.m. and said, "I've got to go to bed." She took herself back to the bedroom, where she fell asleep again immediately. She had been awake for a total of four hours that day. 

The comments from friends regarding my anger were in empathy, and many responses focused on the anger they felt when their loved ones were shortchanged by any given department within hospital systems. When I expand these entries for my published journal, I'll include some quotes that hit home for me. I had worried at times that I shouldn't be making our private lives public, but my parents didn't mind as long as I directed my writing at friends, and not to the world in general at the time.

Now that time is over. They're both gone. I have learned, through this process, that sharing is what cements us as a society. We need to know that we're not alone.

Note for illustration: This is a graphic image of the digestive system showing the bile duct, which is in the public domain. It is one of the graphics used in the article on Cholangiocarcinoma at Wikipedia. If the cancer cannot be removed and is pressing on or within the bile duct, the patient requires a bile duct stent (aka biliary stent) made of either plastic or metal. That stent holds the bile duct open so bile can continue to flow into the bowels. See more at Cancer Council, NSW, "Inserting a Stent".

Time for Myself

I read a lot while caregiving my mother in Virginia. Mom lent me her library card to use at the only public library I knew about in Lynchburg. Campbell County actually has three public libraries as well as some private collections, and I just learned the library snagged the former visitor's center to create a downtown library. In 2014, however, the library on Memorial Avenue was the only one I knew.

I thought mom weathered the hectic and short-lived visit with friends the previous two days, because I felt comfortable enough to leave the house for the afternoon. I stopped at Starbucks on Boonesboro, then traveled down Rivermont to the library. I was familiar with their collections by this time, as I already had gone through the eight books in Stephen King's Dark Tower series, as well as the five books contained in The Hunger Games series by Suzanne Collins. I read the former as a dare to myself, and the latter so I could understand my daughter's fascination with the movies based on those books.

This time I listed The Invention of Murder by Judith Flanders, Indiscretion by Charles Dubow, Deeply Odd by Dean Koontz, and House of Earth by Woody Guthrie as my borrowed reads. I don't remember reading any one of these four books, and I don't know why. I do remember the premise of Deeply Odd, because my late husband and I discovered "Odd Thomas" during one trip to Virginia as we listened to a book on CD. I became slightly addicted to poor Odd.

I won't know why I don't remember those four books in particular until I go through the upcoming memories that Facebook holds. I do know that, after my husband died in 2015, I couldn't read for years. I couldn't concentrate enough, and my retention of what I did read was at zero. Only recently, almost ten years after his death, have I been able to read and retain information. Fiction bores me now, even Stephen King. What I crave is non-fiction works that prove I am now capable of learning and retaining.

Who am I trying to prove anything to? Myself. I think that's important.

Photo by Vincenzo Malagoli at Pexels.

A Visit from Former Neighbors, 2014

The hospital released mom five days prior to this day in 2014, and mom was still recovering from her bouts of cellulitis and fevers from infections when we heard a knock at the door. I answered, and three strange (to me) elderly women and men stood there asking if mom was home. As soon as my mother heard their voices, she was up and shuffling into the foyer to greet the women and their husbands, who turned out to be former friends and neighbors of hers from South Carolina. My parents lived in South Carolina during the 1980s, so they last saw each other almost three decades before this visit.

The women had decided among themselves that they were going to travel to Virginia to see mom for the last time. They had a few plans up their sleeves, and once they settled in for the visit, one of the women approached me to tell me they were intent on cooking breakfast for mom the next morning. They had booked hotel rooms, and they were going out to eat with their husbands that evening. They spent several hours with mom until they saw she was fading. 

I took the photo shown here and I obscured her friends' faces. One, because I don't know if they're still alive; and two, because I haven't received permission from them to show their images, even if I knew how to get in touch with them. I wanted to tell my mother she shouldn't wear green, as that outfit seemed to match her complexion that day. But, I wanted her to be happy, and she was beside herself. I think she knew, deep in her heart, that she had some loyal fans somewhere on this continent.

The next morning, the three woman arrived at 9 a.m. to cook for mom, and mom was shocked. She was still floating on the visit the previous day, and had no clue they were arriving again to cook an omelette for her, something she was craving (that was my tip to her friends the previous day).

I stood by to tell the women where to find certain items, and I think--but I'm not sure--that I set the table. I don't remember, either, if dad put the leaf in the table to extend it to seat more people. I was just busy watching mom and tending to her friends, so I'm glad I took that one photo to help jog my memory about my mother's reactions. I think I took another photo of her friends in that tiny kitchen, jostling for space, but I remember it being a dark photo, too dark to use for anything other than memories. I don't even remember if their husbands came with them or not.

I just remember that this event was a great memory for mom, and I think this visit was the best thing to happen to her since she was first diagnosed. My heart goes out to these women, still unknown to me, to thank them for what they did.

The DNR, Funeral Planning, and Time for Me

Today in 2014, I mentioned on Facebook that my mother's horrendous bed wedge arrived (that matched her bedroom walls), that mom's cardiologist wasn't happy with mom's edema, and that I had discovered the DNR (Do Not Resuscitate) and posted it on the side of the refrigerator. That was a handy place, as the kitchen was located just off the entranceway.

The responses I received from my friends to this post were both heartfelt and expansive. Some of my friends went into great detail on how they handled their own parent's DNR and then segued into how their parent sat down to plan their own funerals. My mother did write her obituary, but she was certain no one would come to her funeral or memorial service, so she vetoed that idea. Hospice had other plans, though, and we did get to enjoy a service months after she died. We lost her obituary, though. That's another story.

The cardiologist was a contentious issue, because hospice wasn't happy with the number of visits that he wanted my mother to add to her schedule. Hospice, at that time and place, was into providing palliative care to make the patient comfortable. The cardiologist was intent on keeping my mother alive, which was going to prove to be a losing battle.

Interestingly, both the cardiologist and hospice agreed that my mother should continue to see her nephrologist, the doctor who specialized in the diagnosis and treatment of kidney disease. I think hospice felt it would be good to keep tabs on that one kidney mom had to know more in advance about when her kidney might give up the ghost. I agreed. Cartainty in the face of uncertainty, for me, was vital at the time. That was a healthier compromise for us all.

Another friend wanted me to find a massage therapist for me, not for my mother. But, as I told her, anytime I left the house, I could count on my mother having an emergency situation. I was thankful for mobile phones, but I still didn't have much freedom.

The one joy I allowed myself to have in my trips back and forth between Virginia and home was to stop at the Blenko Glass Factory in Milton, Cabell County, West Virginia. I would pick up one piece, resulting in several dozen pieces that I eventually sold on eBay. The piece I purchased on my last trip to Virginia that ended with mom's death was a rare one. White frosted glass with dimples. I still have that piece.

I took the photo above during one pit stop at Blenko. It was a very colorful place, and I always enjoyed browsing all the interesting shapes and textures. I do miss those visits.

Some Days are Quiet

Caregiving is a roller coaster, with days that go up and down. On some days there is nothing to report, like today. That's when it's time to sit back and reflect rather than conjure up something out of thin air. I'm sure I'll be here tomorrow with news from the past.

The Unwanted Bed Wedge and Donations

Today in 2014 I wrote that my parents decided to delay the arrival of the hospital bed, because that decision seems so final. Mom chose, instead, to obtain a wedge for the bed she shared with dad so she could sleep with her chest elevated to help her breate better. What a mistake that decision turned out to be. That wedge was huge, she used it once, and it stayed with us until my father died. 

The wedge was blue to match the bedroom walls, removeable fabric-covered foam, about 27° angle, and it took up more than 1/2 of my parents' queen-sized bed. When mom used it, she said the bottom of her spine hurt. I knew what she meant, and that position wasn't the best for her, or for anyone for that matter. But, since hospice ordered it and my parents didn't pay for it, they kept it.

Since that wedge stayed past dad's demise, it was up to me to decide what to do with that durn thing. I donated it. I hope it found a good home.

Speaking of donations, plan now to decide what you want to pass on to your friends, family, children, etc. and which things need to be donated. I had to make those decitions alone for both parents, as my siblings live out west and weren't part of the day-to-day plans and outcomes regarding either parents' deaths. My parents didn't say a word about most of their items, and I didn't know to ask. I wish I did. My life would be so much easier.

Even now, many of my parents' belongings are sitting quietly down in my basement, waiting for me to decide what to do with them.

Hospice Arrives and Our Brains Hurt

On this day, 12 January in 2014, my parents and I were introduced to hospice for the first time in our lives. Although my parents had already lost their parents, the only experience they had with hospice (that I remember) was when dad's brother engaged with hospice to help take care of his dying wife in 2007. We were intrigued, and lodged that possibility of help in the backs of our brains for future use. Now was the time to see if it would work.

I noted in a Facebook post that hospice nurses drilled my father and I with our parts in taking care of mom. Our days would be filled with counting sodium mg (3 grams per day max), liquids (no more than 1,500 ML per day), tactics on how to shoot saline into various tubes protruding from my mother's body, how to change dressings, and learning how to operate two different oxygen systems. Dad did panic once when he couldn't replace the cap correctly on mom's bile duct catheter, but he eventually got it. He also cooked most of the evening's dinner and I picked up a baked chicken at Kroger.

I don't know how many chickens we consumed during mom's illness and especially after she died, but that's a story in itself. I pray for all the chickens.

The man who brought the oxygen was entertaining. Dad had a great time talking with him. The parents had a gas fireplace, and the oxygen man was especially leery of that contraption, but dad promised they wouldn't turn it on while oxygen was in the room. We eventually stored the tanks in the corner of their master bedroom, and we "hid" the current oxygen tank in use behind the easy chair in the living room.

Now we waited for all the "contraptions" to arrive, including a hospital bed, shower chair, wheelchair, and walker. Mom was on cloud nine with all the attention, but when everyone left she became surly about the incoming items, especially the hospital bed. Dad insisted on it, though, because of all the conveniences it offered. Mom was insistent on where to place it. It would go into the living room, where anyone who visited could see it.

That hospital bed eventually became the center of attention.

Cancer Caregiver? Participate in this Survey...

Hi folks -- I'm passing on this information for Alexis, who is studying the ways that caregivers might interact with their support groups. I'll let her tell you all about it...

"My name is Alexis Johnson and I am a doctoral student in the Department of Communication Studies at the University of Nebraska-Lincoln. My research centers on health communication processes, and I am conducting research that I hope will improve our understanding of supportive communication between social networks and family caregivers of patients with cancer. As someone who has provided care to a patient with cancer, I am interested in conducting research that is aimed at better understanding the memorable, supportive messages that are shared with family caregivers in cancer.

"To participate: Participants in the states of Nebraska and Alabama must be at least 19 years old or older to participate, participants in the state of Mississippi must be at least 21 years old to participate, and participants in all other states must be at least 18 years old to participate. If you meet these requirements, and are a current family caregiver of a patient with cancer, and have 20-30 minutes to complete an online survey, you are eligible to participate in this important research."

You can learn more about this survey by going to the site and clicking on the link on that page. You can also find Alexis' credentials and contact information at that site.

When are Support Groups Helpful?

When do you know when to connect with other individuals who share your diagnosis or your situation? It's up to you.

I found a great cholangiocarcinoma (CC) support group when I was at dad's house last month. The support group is a "closed" group on Facebook, which means that only members can see and respond to messages on that group's page. As far as I can tell, the group consists of patients and caregivers (current and "after care"), although this non-denominational group also welcomes medical professionals and students.

I never sought out a support group while caregiving mom, because I felt that I was getting the answers I needed from various reliable resources. Also, once I was a full-blown caregiver, I never had time to seek support. I was too busy with mom's appointments, her medications, the tasks we had to schedule (like saline flushes for her bile duct catheter), with my own work, and with my own well-being.

Looking back, I'm not sure I could have tolerated a support group, because I was on a short fuse many times. I did check a few of those groups out, and I wasn't ready. Lighthearted entertainment was not my cup of tea during my tenure, and I sure didn't want to hear about hope when we knew we had no hope with mom's case. I also didn't want to hear about bad news when I knew the news was anything but good for us (some folks will understand this logic!).

I will say I'm more than ready for the Facebook support group now. Now, I have something to share, especially with newcomers to the group who -- on almost a daily basis -- are reporting a loved one recently diagnosed with stage four CC. I'm learning a lot about this disease from patients who have been exposed to treatments that my mother couldn't tolerate with her physical condition. I'm also learning that patients often know more than their doctors and oncologists about their conditions.

I'm somewhat sorry that I denied myself the support of a group during my mother's diagnosis and death, but I did share everything with my friends on Facebook. Believe me, I don't know what I would have done without my friends' support. And, at the time, my friends were far more substantial in their support for me than a stranger's support. Now, however...

I seem to find more support among other caregivers and CC patients than I do among my friends. I don't know why this sea change occurred after mom's death, but I'm sure a lot of this disconnect has to do with my push to finance a space of time to finish my memoir. So commercial! At the same time, I also think that friends have only so much tolerance for death and dying.

And, it's for that latter reason that I find support groups so attractive these days. There's something about a finite boundary on life that brings out the honesty, support, and love that happens nowhere else but within a support group. In that environment, I feel I can share my tears, inappropriate laughter or comments (and find immediate forgiveness), and fears.

If you feel you need a support group, seek one out. So many support groups exist for all types of cancers as well as for caregivers. I'm not sure if this link will work for the CC support group at Facebook, but give it a shot: https://www.facebook.com/groups/CHOLANGIOCARCINOMAsupportGroup (if this link doesn't work, please let me know via Facebook).

For caregivers, I recommend Caregiving.com. This is a great space for folks who are caregivers to spouses, siblings, and friends who suffer from a myriad of physical impairments. Denise will probably meet you at the door. Please tell her I sent you!

How Bile Duct Cancer Begins...

My mother's mother in 1954. She died from liver complications in 1969. Did my mother inherit mutated genes from her mother? Doubtful, but mom did inherit some issues that complicated her disease.

Now that my frantic caregiving chores for mom are over, I've been concentrating on how her cholangiocarcinoma occurred. My mother's age contributed to her risk factor. More than two out of three patients diagnosed with cholangiocarcinoma are older than age 65, and my mother was 78 when she was diagnosed. But lately I've been viewing more news on younger deaths from this cancer.

Cancer usually results from gene mutation, and sometimes this proclivity to certain mutations is inherited. Gene mutations related to bile duct cancers, however, usually are acquired during a lifetime rather than inherited. What changes during a lifetime could contribute to bile duct cancer?

• Liver fluke (parasitic flatworm) infections that settle in the bile duct and cause irritation is a major cause of bile duct cancer in Asia, but very rare in the U.S. It can affect people who travel to Asia and who eat raw or poorly cooked fish in that region.
• Bile duct infections or inflammation (cholangitis) can lead to scar tissue (sclerosis), which can create a risk for cholangiocarcinoma. Many people who have this disease (Primary sclerosing cholangitis or PSC) also may have issues with ulcerative colitis. Risk factors for progression of any of the issues to bile duct cancer can be as high as 30 percent.
• Bile-filled sacs connected to the bile duct are called choledochal cysts. The cells in these cysts, as with cysts in other parts of the body, can contain areas of pre-cancerous changes.
• People who are born with, or who develop, abnormalities where the bile and pancreatic ducts meet can be at higher risk for bile duct cancer. This abnormality can prevent bile from exiting the ducts normally, and that condition can prove deadly.
• Cirrhosis of the liver, caused by alcohol excess or diseases such as hepatitis, can create scar tissue that can affect the bile duct and lead to #2. Liver diseases and subsequent scar tissues can contribute up to 15 percent of bile duct cancers.
• Exposure to certain industry chemicals and PCBs can also lead to possible bile duct cancer.
• Thorotrast, a contrast agent that radiologists no longer used in x-rays, is a huge culprit in cholangiocarcinoma cases in individuals who are old enough to have had x-rays through the mid-1950s. The connection between the ingestion of Thorotrast and bile duct cancer can be up to 100 percent.

Some medical facilities and cancer institutions list other causes, including obesity, exposure to asbestos, smoking, exposure to radon, and diabetes. All these factors often contribute to liver damage and then scarring and damage to bile ducts. Is there a way to determine if you are at risk for bile duct cancer? Yes -- if you know that you are subject to any of the conditions listed above.

Can this cancer be detected early? According to the American Cancer Society, the answer is no.

The bile duct is located deep inside the body, so early tumors cannot be seen or felt by health care providers during routine physical exams. There are currently no blood tests or other tests that can reliably detect bile duct cancers early enough to be useful as screening tests. Without effective screening tests, most bile duct cancers are found only when the cancer has grown enough to cause symptoms. The most common symptom is jaundice, a yellowing of the skin and eyes, which is caused by a blocked bile duct.

From experience, I can tell you that the jaundice is a symptom, but it's also an alarm. It's the alarm that starts the race to the end of the cancer patient's life. How much time will that patient have? Anywhere from three months to 18 months, depending upon a number of factors including new procedures that can extend that patient's life.

But, that's another story...

Michael Smith's Music Magic

Mom's banjo uke, minus strings...

About one week after mom died in June, I sent a Facebook message to friend, musician, and neighbor, Michael Smith. I attached a photo of a musical instrument I found hidden in one of mom's closets. It looked like a miniature banjo at 21 inches in length and with a seven-inch diameter head. It had two "f" holes in the resonator's back and it was branded Ferry Quality.

I know mom told me when I was much younger that she played the ukulele, but I never remember her playing one. I definitely don't remember seeing this instrument before I found it in the closet. Michael informed me that this instrument was more than a ukulele -- it was a banjo ukulele.

I searched high and low on the Internet and found little about the Ferry Quality banjo uke; but, I did discover Banjo Ukulele Haven, which details the history and value of some other banjo uke brands. Either the banjo uke mom owned is very rare or it's not in demand, but Michael seemed to like it. He encouraged me keep and preserve it by putting it in a display case. I almost took it home with me in August, but something told me to keep it at dad's house.

Fast forward to September. I am back at the folks' house, helping dad with various and sundry things. Before I left, Michele Larocque from Deep River Studio interviewed me for a book trailer that she was making for my Indiegogo fundraising project. We talked briefly about music for the video, but we were at a loss as to what to use for background sound. Mom liked all types of music -- opera, classical, gospel, folk...anything but rap. The tone of the video also needed consideration, and I thought about my choices on the way to dad's house.

I finally decided on blues, so I asked a musician friend to help me out. He didn't respond, and time wasn't on my side. Several people nudged me to use royalty-free music or to pay for a popular artist's piece, but I wanted desperately to ask someone local to help out. I know plenty of very good local musicians, so I went to Facebook to ask if anyone could help with an original piece.

I received a ton of responses over the 24 hours after I posted, but Michael was the only musician to respond with a video and an original piece -- within 24 hours! I was floored...the music was a great mix of eastern, bluegrass, and blues (yes, obviously this mix is possible), so I wanted Michael to provide the music for the video.

Unfortunately, Michele needed a longer piece for the project than the one that Michael originally produced, so I talked to him about this issue. I liked his original music and he did, too -- but after he saw the rough cut for the video, he was excited about pushing his music to another level. To make a long story short, he wrote and performed a final piece that was dedicated to his brother, Paul, who recently died from cancer.

"Paul's Song" is beautiful. Michael shared it with me after he recorded it in a local studio (All Things Music at 522 Washington Street in Shelbyville, KY). I knew Michael was a stellar musician, but I was stunned by this piece. I was honored that Michael was willing to share his music with me, and I was humbled by his inspiration.

Michael's music on the video comes in bits and pieces, and it doesn't represent the entire song as Michael wrote it. But, that's what happens with a music/audio/visual mix, and Michele, in my opinion, did a bang-up job on the video (shown at the top bottom of every page, because I'm that proud of the final product). This lack of musical continuity is sad, however, because the full rendition of "Paul's Song" could melt your heart. On the other hand, Michael still retains the original piece in all its glory, and it is up to him to decide what he wants to do with that music.

I do know that mom's banjo uke belongs to Michael. In fact, I could almost hear her voice say a resounding "Yes!" at the exact moment I realized what I needed to do with that instrument. When I return home, I will return with that Ferry Quality banjo uke and hand it -- and the accompanying "Original Guckert's Chords for the Ukulele at Sight Without Notes or Teacher" booklet -- over to Michael's care.

Michael, thank you for blessing me with your talents, skills, and love. I only hope I can do the same for you one day, friend. Cheers.

NOTE: Michael doesn't have a website, but he does give uke lessons in La Grange. If you'd like to take lessons from Michael, please message me on Facebook or Twitter, and I'll ask him to get in touch with you.

Cancer, Caregiving, Contentious Love Book Trailer...

Yeah -- well. I'm pretty stoked about the results of the trailer. Michele Larocque of Deep River finalized the work today, and it's up at the Cancer Caregiving, Contentious Love fundraising site, YouTube, and Vimeo...and, people are sharing it all over Facebook. It's a gorgeous piece of work, and Michele dreamed it all up.

The music? That's another story altogether, and I'm planning to tell you about it before the end of the week. Let's just say that I've been blessed by Michael Smith, a neighbor. He's downright genius with a big heart.

Here's the trailer:

Who Hasn't Been Touched by Cancer?

Mom -- hoping to actually drive this Jaguar on her 60th birthday in 1994.

I've been floating between two towns during the past two years, trying my best to actually be present in my own home when I've been pouring my heart and energy into my parents' home. Caregiving takes effort. It takes money. It can take a person's soul if the caregiver isn't careful.

That's what cancer does. It eats at its host and it tries to reach out to eat everyone who cares about the cancer patient.

In both towns, I hear stories about people who have died from cancer, people who have recently been diagnosed with cancer, and people who are surviving cancer. In most cases, individuals relay those stories in a "hush hush" manner, as though to speak about cancer out loud makes that disease contagious. The survivors are a different story, because even the media wants to shout those success stories from the rooftops; but, those stories are fraught with doubt. Are the survivors really "cured," or are these cancer survivors and their families hoping against hope that that victims are in remission forever?

Who hasn't been touched by cancer? Who hasn't felt hope that cancer can be "beat" into submission? Who hasn't felt that this disease deserves only a whisper instead of a shout...shouts of anger that people of all ages are falling victim to these alterations in their DNA? People we love. People we don't even know who touch our hearts with their stories.

Who hasn't been touched by cancer? I'd like to know.

Things People Say to People With Cancer

During my stint as caregiver to my mother, I was privileged to accompany mom on her visits to her various doctor appointments. There were many appointments; but, as mom continued to hang on to life, the appointments dwindled. Instead of explaining why those appointments began to shut down, I'll share a few quotes that I heard first-hand from mom's primary physicians and nurses:

• We didn't expect you to live this long (doctor who was treating mom)
• Cremation? Why? You're so beautiful, I thought you'd go the open casket route (nurse).
• You're still with us? (doctor who was summoned for mom's treatment for a second time within four months)
• I can't look at the cancer count. I want to sleep at night (a doctor's answer to my question about mom's cancer advancement).

You get the idea -- out of the mouths of babes scenarios, right? Except the individuals who offered their opinions were professionals. What, then, can cancer patients expect to hear from friends and relatives who aren't professional doctors or nurses?

If you know a cancer victim, please don't try to excuse yourself from making stupid remarks to that person because you're not a professional. If anything, as a friend, relative, or neighbor, you might have a bit more insight into that cancer patient and become more compassionate. At least, that's the hope.

A friend of mine found that sometimes that hope runs slim. Craig Allen has cancer, and he is a realist about his prognosis, and responses to his current treatment option drive him mad. Literally. He's taking hormone treatments that provide him with physical reactions that are similar to menopause hot flashes. When he shares this news with female listeners, they often respond with:

"Ha! Now you know what we go through."

Excuse me? Your menopause hot flashes are similar to my cancer treatments? I'm sharing a link to Craig's justifiable rant. Please read to understand how a simple statement (like "We didn't expect you to live this long") can affect a person who is dying from cancer.

Thank you.

Supporting the Arts & Letters

This is the trailer for Afterthoughts by Lynn Tincher, produced by Dark Palette Productions

I love to support artists. I have supported many writers, musicians, videographers, other authors, poets, crafters, and actors over the years, and it's been my pleasure. Often, the payback is unexpected, like when local author Tony Acree dedicated his latest book, The Watchers, to another local author, Lynn Tincher, and me. What a gift! All I did was tell him to quit editing and keep writing (advice that is difficult for me to follow, by the way -- I was throwing down the gauntlet!).

That's why I'm supporting two artists I know from the get-go with my Indiegogo fundraiser.

1. Michele Larocque is a photographer, writer, poet, and visionary. She is a friend, too. She is creating a trailer for my fundraiser at Indiegogo, and it's in its final stages. You can find her on Facebook.
2. When I was asked to find some music for that trailer, I reached out to my local musician friends. Within 24 hours, neighbor Michael Smith came up with an original track that he's modifying now to fit the trailer. I'm so blessed, because Michael, too, is a visionary and a talented musician. He teaches ukulele, but he's adept at any stringed instrument. He doesn't have a site I can point to; but, if you're a local I can provide you with his number if you want lessons.

The wonderful thing about my Indiegogo campaign is this: Other artists now are supporting me, and I'm thrilled beyond words. My gratitude is tangible...

• I'm mentioning Lynn Tincher again not only because she was a generous donor to my Indiegogo campaign, but because she's also involved in a project that is making tracks. She's creating a film from her first novel, Afterthoughts, and she's having great success with this endeavor. Please support her.
• I met another donor to my campaign, Pearl Ketover Prilik, at Robert Brewer's Poetic Asides, where we've been writing poems side-by-side for a few years now. I taught Pearl how to make a heart with ascii type, and she's been a devoted heart fan since that lesson.
• Speaking of Robert Lee Brewer, he generously offered to be a reference for my applications to writer retreats, and you can purchase his latest poetry, Solving the World's Problems, at Amazon. Michael Dwayne Smith from Mojave River Press & Review also stepped up to offer a reference, as did Kim Michele Richardson (another local), author of The Unbreakable Child and columnist at Huffington Post. Other people who offered their support include Jay Sizemore, author of Father Figures, and Sheri Wright -- a woman who offers a bagful of talent in photography, poetry, writing, and now in documentaries.
• Other donors to my campaign include Penny, who makes jewelry from mushrooms (how creative is THAT), and sells at local markets in Virginia. Another donor, who wishes to remain anonymous, also is a writer and a poet. Yet another donor, Diane, writes AND edits, and she helped me tremendously with the copy on my campaign as well as donated to my cause.

I'm blessed to be surrounded by such giving and creative people, and I haven't even tapped the surface of my well of creative friends. I am VERY blessed. If these individuals have faith in me, then you can have faith in me, too. Visit Cancer, Caregiving, and Contentious Love at Indiegogo.

How about you? Do you create? Do you support creators?