Friends Who Keep My Feet on the Ground

Everything in my life has changed since my caregiving stint with Mom and with her death. I still can't think clearly about ordinary things and sometimes I feel like I'm floating through life. But, every once in a while a friend steps in to pull me back to earth. While on terra firma, I tend to make some rather large strides...like Gumby.

Take, for instance, my friend Kim Jacobs, owner of Turquoise Morning Press. One day, out of the blue, I receive an email from Stephen Zimmer. He said that Kim had recommended me to serve on a writers' panel at the second annual Imaginarium Convention. After reading about all the guest speakers at this event, I felt a little intimidated...published authors many times over, owners of publishing houses, etc...how in the world would I fit in?

Then, I began to write my bio for the guest author pages, and I realized how much I had accomplished in my short writing career. That was a good feeling. The results also were a bit ironic...it appears I've focused on financial issues during most of my writing career...and I don't have two pennies to rub together. Ironic and hilarious, actually. 

What's that adage about writing about what you know? I guess I sidestepped that advice. At any rate, I'm on board, and I'll be participating in this event in mid-September.

Then, I learned that my friend Phyllis, an 11-year-cancer free breast cancer "warrior," was participating in the Kentucky Derby Festival Marathon today. She was gathering donations for the wonderful Gilda's Place in Louisville. For $20, a person could purchase a ribbon that Phyllis would wear during the event. I jumped all over that one, but when I went to donate, I learned that my credit card information was stolen about five days earlier. The only way to donate was through credit card.

But, Phyllis worked it out, and the result is shown in the photo above. Phyllis attached the ribbons to a ribbon and she wore that contraption as a tutu. In the rain. What a cold and messy day! But, Phyllis finished the marathon, and she thinks her time was 3:49:00. Mom's ribbon is Kelly Green, the color that represents bile duct cancer.

What a gift. What a memory. What a wonderful thing for my Mother, who loved horses and Derby week. That love came, of course, from the time she spent out West with us and, mostly, with my brother and his partner, Linda, at Menoken Farms.

Thank you, Kim. Thank you, Phyllis. Thank you both and everyone else for your parts in keeping my feet on the ground and moving.

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...

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 

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.

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.