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.

I Made the Grade on the Garden Hurdles Today

The first three plants to feel the spade.

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

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

Mom was the Master Gardener.

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

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

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

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