How to Never Forget the Losses

One of two terrapins traveling on its annual pilgrimage through my parents' yard.

I'm fond of Facebook...and I think most of my friends are aware of my "addiction." I manage Facebook pages for a few clients, so it's second nature for me to toss up a photo or a pithy saying on a daily basis on my own wall or pages while at that site. While this habit has become...a habit, I've realized lately that my additions to Facebook have become somewhat of a diary.

In my searches for what has happened in my life over the past two years, I've suffered pangs of hurt, sadness, and even utter and bitter loss over and over again. That pain has worsened with the new Facebook "look what happened on this day last year...or two years ago...or even a decade ago..." feature. Although I'm sure this daily reminder of the past is meant well, it can shake my socks off sometimes.

This morning, for instance, I was whacked in the face with the image of the terrapin shown here. Yes, it's just a turtle. But, it's one of two turtles that make an annual pilgrimage through my parents' yard. These two turtles...or their relatives...have been traipsing through my folks' yard since they moved here in 2000. The turtles just don't pass through. They stick around for a few days, playing hide-and-seek with each other and with us in the gardens before they move on.

While at some other point in my life I might have thought warmly about this photo and its family tradition, I happened to glance at the photos that braced that turtle image in my Facebook "mobile uploads" album. Those photos portrayed our first visit to the teaching hospital where mom was first diagnosed with cholangiocarcinoma. We had just returned from that city to discover the turtles in the yard, exactly two years ago today.

I'm glad I have this chronicle of events that happened over the past two years, because those clues are vital for writing the memoir. But, I'm not very keen on how I keep getting pinched by the past in the most unexpected ways. Sometimes, I feel as though I'm picking at a scab. What saddens me further is that we haven't seen the terrapins yet this year.

Maybe. Maybe. Maybe I'll get lucky and see them before I have to return home this upcoming weekend. And, maybe one day I'll truly be grateful for the memories.

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...

Differences Between Hospice and Palliative Care

When it comes to elderly relatives -- do you need palliative or hospice care?

It's World Hospice and Palliative Care Day, and this event provides a great opportunity to talk about the difference between hospice and palliative care. I'll be the first to admit that I didn't understand the difference between the two services until after mom was diagnosed with cholangiocarcinoma. I did understand hospice to a degree, as relatives had used this service prior to mom's diagnosis. The first time I really understood palliative care, however, was when mom received her first chemotherapy treatments.

After mom's failed Whipple surgery, the oncologist suggested chemotherapy to hold the cancer at bay. The doctors all told mom, without qualms, that her cancer was not "curable" and that the chemo treatments were "palliative." In other words, she would receive treatments that would stem the cancer cell growth until she could no longer take chemo. This was a "chemo for life" program, where "life" part meant that treatments would continue as long as mom could tolerate them.

There are no time restrictions in palliative care situations. Patients can receive palliative care at any stage of illness, whether that illness is terminal or not. The point behind palliative care is to provide comfort for the patient. This comfort is especially important for the patient when the the patient's disease is at its most uncomfortable.

Palliative care can be received at home, in the hospital, in a treatment center, or at a doctor's office. The fuzzy part of this type of care is that it covers a broad spectrum of diseases at various stages within that disease. The important thing to remember is that palliative care is not hospice, although hospice and palliative care go hand in hand.

Hospice is for end-of-life care, and it's all about palliative care...making the patient comfortable through various methods that range from Styrofoam wedges to make bed rest more comfortable to morphine to ease end-of-life pain. Although policy has it that hospice care is for the last six months of life, we learned that the local hospice had patients that were going on three years in treatment. On the other hand, some hospice patients barely see the oxygen tanks come through the door when they exit life.

Although hospice generally is ordered by the patient's primary-care physician* for end-of-life care, no one has a crystal ball. The practice of predicting someone's end of life sentence is based on both fact and guesses. Sometimes facts win. Sometimes guesses far surpass wildest hopes, especially when it comes to family members who don't want to lose that patient.

Interestingly, hospice couldn't begin for mom until her chemotherapy palliative care ended. That "chemo for life" program lasted as long as mom's body could tolerate the limited amount of chemo that she was taking. Since one oncologist earlier in mom's care had the guts to give us a time frame of three to six months of life without any treatment for her cancer, I had at least a base to work from after mom's chemo treatments ended. Mom's then-current oncologist must have known as well, as she ordered hospice for mom when she stopped mom's treatments, and that end to treatment came approximately six months  before mom's life ended.

Hospice provides palliative care, and that's the thrust of their services. In mom's case, however, another goal was imperative: that we try to keep mom out of the hospital. Her capacity to fight illness and infection was low, so home care was the best option. Additionally, mom wanted to die at home, and hospice made that goal a mission in mom's case.

To make a long story short, here are some major differences between hospice and palliative care:

1. Hospice services can be provided at home, where palliative services provided by medical professionals often are provided through a medical facility.
2. Palliative care knows no time restrictions, whereas hospice care is, supposedly, for the last six months of life.
3. Patients pay for palliative care the same way they would pay for any other treatment -- with cash, insurance, or other payment methods. Hospice, on the other hand, takes over the bills and everything is paid through Medicare. At least, that's the current structure in most cases. It's always good to check with your local medical facilities to understand your possibilities.

I can say nothing but good about mom's hospice care at this point, especially on a day when we honor the services provided by palliative and hospice care. The goal? To make these services better all around and as widely available as possible to people who need them.

* Primary care physician can be any type of doctor, from cardiologist to oncologist.

A Ritual I Developed During My Caregiver Stint

My ritual is somewhat like a pinata ceremony.

I write these blog entries in hopes that readers won't judge me, as I am bringing my own perspective to topics that deal with a death in my family. Although death is common ground, and should -- above anything -- unite us somehow, I've learned that folks may not agree with my outlook on certain topics. Feel free to disagree; but don't tell me I'm wrong, especially over a ritual that saved my sanity for the past two years.

According to The Chaplaincy Institute, ritual can make a person "stop, focus, and make sacred that which is ordinarily taken for granted. A ritual can be used as a way to give voice to the unspoken, facilitate healing, or remember a person or event. It can also be a way to refocus personal thought patterns so they become self-serving, not self-defeating. A ritual does not need to be elaborate or take a lot of time. In fact, to keep meaning from getting lost, the simpler the better."

That article goes on to provide an example of a ritual that involves an altar, candles, and prayer, which is fitting for that particular perspective. Other rituals I've known caregivers to use include yoga for meditative qualities and also for keeping the body fit. I love yoga practice, and I understand how yoga benefits me. But, I haven't had a class since the last one I took with Terri Hug, and that was before I even learned about my mother's illness. Terri is a sister from another mother, and I'm having a difficult time choosing to take on another yoga instructor after becoming so close with Terri. I need classes, because I don't have the self-discipline to practice alone.

Other caregiver rituals might include a set time each day/week to get away, or time to be alone. In my experience, however, getting away from home was fraught with anxiety, because every time I did leave home, mom would encounter an emergency situation. The only time I was able to get away was during Easter weekend, when some friends kidnapped me to spend a weekend with their poet and bard neighbors. But, that wasn't a ritual, although the escape was sorely needed and appreciated.

My alone time and ritual came about without planning. I still practice it after mom's death, especially when I'm at my folks' house. I leave the house proper to sit in the screened porch with my Android and begin to play Candy Crush Saga. Playing that game in itself is not a ritual; but, playing game #75 over and over and over again became a ritual for me, one that isn't elaborate or that takes a lot of time.

Other friends who play that game continue to offer free passes for me to get past game #130. Yes, that's how far I got before I learned about mom's cholangiocarcinoma. But, I'll never go there again. I doubt if I'll ever get past game #75. If I play the game without thinking about the game, it provides me with time for reflection and planning. If I play the game with intent on beating the other two women who are ahead of me, the play takes me away from everything. The fact that the game only allows play for five games unless the player wins a game (garnering one free game per win) is convenient, too. Once I've played through those five or so games, I'm revitalized and ready to get back to more pertinent tasks at hand.

I play game #75 when traveling, too, because my husband refuses to let me drive. But, the game isn't a ritual then -- in fact, it's boring. The only time Candy Crush Saga game #75 becomes a satisfying ritual is on my parents' back porch. This rite offers me comfort, mindlessness, and even some sense of self-worth and achievement. I am only a few points away from obtaining the #1 spot on that game. When I achieve that goal, I don't know what I'll do.

Note: Candy Crush Saga is a puzzle game distributed by King.com. The logo image is from Wikipedia.

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."

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.

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 

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.

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.

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.

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.