The Scare of My Life

Always the advocate, Debra has written (with the expert assistance of Tom Curtis) for publication the following first-person account of her recent life-threatening illness:

The Scare of My Life
Why You Should Think Seriously About Getting Your Health Care at UTMB

It started with some bad clams I ate during a visit to Maryland—or so we assumed. In fact, my diagnosis was far more serious than the hepatitis A that my husband Bob and I erroneously suspected I’d contracted. Still, with luck I may end up owing my survival to early diagnosis and a highly skilled surgeon. And I owe that to having decided a year ago to get my health care at a world-class academic medical center where well-trained and highly experienced physicians and surgeons diagnose and treat some of the most complex and terrifying medical problems human beings can face: UTMB in my new hometown of Galveston.

But I’m getting ahead of myself. After returning from Maryland, I threw my back out exercising too intensely in a Pilates class and was bedridden for several days. I called my primary care physician, Dr. Tom Blackwell at UTMB, who prescribed medication and physical therapy. Later, I observed that my urine had turned a vivid orange, which I suspected was a side effect of the medicine. Still later, the physical therapist noted that my skin was turning yellowish. The next morning, a Saturday, when I came downstairs for breakfast, Bob said my eyes looked like they’d been colored yellow with a Day-Glo highlighter.

By now I had all the signs of hepatitis A—symptoms I recalled from decades ago when my hard-living best friend developed the disease. At this stage of my life, there was no chance that my own risk factors were related to sex, drugs, or rock-and-roll: Infected shellfish was the obvious suspect. Because that was my one hepatitis risk factor, and because there’s no treatment for hepatitis A, many, perhaps most, doctors probably would have advised me to just rest up and let the infection run its course.

But I wanted reassurance, and although it was the weekend, I paged Dr. Blackwell’s very competent and compassionate nurse, Tonya Arnold. She got back to me promptly and scheduled blood tests first thing Monday morning. That morning she even met me at the lab. While the hepatitis tests didn’t come back for days, the liver counts were available quickly.

Tonya called alerting me that my liver counts were abnormally high and that at Dr. Blackwell’s instruction she was arranging for an outpatient ultrasound examination Tuesday afternoon. As I was leaving the ultrasound lab in the Primary Care Clinic, and Tonya called my cell phone: Dr. Blackwell had already received the ultrasound and was going to admit me to the hospital that night for an endoscopic ultrasound and a battery of other tests including a CT scan.

Chillingly, the tests revealed a lentil-sized tumor on my ampulla of Vater, the area where the bile and pancreatic duct enter the duodenum. It was blocking the drainage from the gall bladder, bile ducts and whole biliary system into my stomach. Pancreatic cancer is usually fatal and not discovered until it has metastasized. The good news was that my tumor was small and apparently contained, and that its location had caused the symptoms that prompted early diagnosis.

The doctors recommended something called a Whipple operation, a complex procedure popularized by Dr. Alan Whipple in the 1930s that involves removing the head of the pancreas, part of the bile duct, the gallbladder and the duodenum. The procedure remained extremely risky into the 1970s, when up to 25 percent of patients at tertiary centers and up to 40 percent at general surgery centers died from the surgery. In recent years, however, the operation has become much safer, with a mortality rate of less than 4%, at least when it’s done at tertiary care centers where many of the procedures are performed by a select few surgeons.

In another stroke of good luck for me, UTMB has a Pancreatico-Biliary Surgery Center. Its leader, Dr. William H. Nealon, and Dr. Courtney M. Townsend, Jr., UTMB’s chair of surgery, had recruited Dr. Taylor S. Riall, a skilled pancreatico-biliary surgeon from Johns Hopkins University—a center recognized around the world for its expertise in this field—to join it. Dr. Riall has extensive experience in treating patients with cancer of the pancreas and has written many papers helping to define its treatment.

During my initial hospital stay, I met everyone who was expected to be involved in my surgery and post-operative care. While the whole team had stellar credentials and experience, I was especially impressed with my prospective surgeon, Dr. Riall.
Though she is young and petite in stature, her brilliance and personality filled my hospital room, and she exuded confidence. After a very, very serious discussion of what was proposed—Whipple operations are about as complicated as any surgery can be—she talked frankly about her experience level, where else the procedure is being done, where she studied, and, significantly, her mortality rate: less than 2%.

She and oncologist Dr. Avi Markowitz (who had been part of a group that invented the current chemotherapy for pancreatic cancer using the only drug approved by the FDA specifically for it) and radiation oncologist Dr. Ivan Kessel were very welcoming. They even offered to facilitate my getting second opinions from doctors at M.D. Anderson or any other U.S. hospital.

I went home from the hospital for a long weekend before the scheduled surgery. I promptly went online researching all the doctors who do the Whipple operation. Before I finished reading about all of Dr. Riall’s awards, accolades, publications, training and experience, I had exhausted myself. But I was convinced that I was in the best possible hands.

The surgery took place the following Tuesday. Immediately afterwards, my good friend Ann MacNaughton said that Dr. Riall told waiting friends and family that she had been able to “close” the incision an hour and a half sooner than scheduled because “she”—meaning me— “has beautiful anatomy.” Ann said they responded, “We know that” and Dr. Riall laughed and added, “She is text-book perfect inside.” The surgeons removed 21 lymph nodes, but only one of them turned out to be cancerous—so it’s possible that this was a surgical cure.

I recuperated for about a week in the hospital on the oncology ward, 6B. Medical students flocked to my room to offer thanks for my allowing them to watch a “textbook procedure.” I can’t say enough about the quality of the nurses: They were terrific—very professional, very human, and very caring on top of that. Now I’m regaining my strength and girding myself for the next steps—chemotherapy, then radiation, and then more chemo—a protocol that Dr. Markowitz said he would recommend to his adored wife, my friend Margo, if she had pancreatic cancer like mine.

In the seven years since Bob and I bought our house in Galveston and in the two years since we moved here, I have literally hundreds of friends and former constituents who have also moved to Galveston but who still make that grueling trip up the Gulf Freeway for their medical care. I would encourage them—no, I’d push them—to get their medical care at UTMB.

My own experience over recent weeks has taught me a crucial lesson: Talented generalist physicians like Dr. Blackwell and top-flight nurses like Tonya Arnold working at academic medical centers know to look beyond the obvious. And close at hand they have remarkably skilled and experienced colleagues who are leading specialists in a range of medical and surgical fields to whom they can refer their patients. Having a leading health sciences university and hospital with excellent doctors in a variety of specialties minutes from your door is an incredibly valuable resource—and one that someday might save your life.

See How Her Garden Grows ...

Debra spent much of Saturday and plans to spend much of Sunday harvesting lettuce in her plot in the San Jacinto Neighborhood Community Garden and sprucing up the gardens at home. She's even been threatening to climb a ladder to prune the hibiscus over the pool unless Bob gets busy....Bob has taken to hiding the ladder. Sometimes, you know, we have to take drastic measures just to protect Debra from herself.

Nevertheless, she's planning to meet with Clean Galveston tomorrow to schedule the house for an upcoming Backyard Garden Tour. Bob's gonna have his work cut out for him, I'm sure. And Deb specifically remarks what an excellent caregiver he's been.

Being outside in this beautiful weather has really brightened her spirits! Nothing like a little fresh air to cleanse the soul.

Stopped by the house this morning and the flowering plants and floral arrangements are truly spectacular...looks like a veritable flower shop at 1828 Avenue M!

Thanks again to everyone for your 'Well Wishes' and continued support for Deb's recovery which, by all outward appearances, is coming along well and swiftly.

With no real diet restrictions, she's even progressed from Campbell's chicken soup to Galveston's tasty local Mexican food. Looking forward to a lunch outing today with a sea view.

More later ...



Kitty Allen

Technologically Challenged? How to Post a Comment to Debra ...

I've received a few emails and phone calls requesting detailed instructions on how readers can post a comment to our Debra blog! It's really quite easy...

1. After reading the current blog and next to the time it was posted, you will see a current count on the number of comments.

2. Click on this comments link.

3. This will open up a new window. Please write your comments in the empty box.

4. Below this box where your comments are written, click on OTHER (to identify yourself). You can select Anonymous, if you prefer.

5. Then type your name (just ignore the web address space below the name block).

6. After typing your name, you will see two buttons: PUBLISH YOUR COMMENTS and PREVIEW. Select whichever your prefer.

7. When you are satisfied with your comments, select PUBLISH YOUR COMMENTS.

8. Your comments will NOT be published unless you click the PUBLISH YOUR COMMENTS button.

9. It's that easy!

10. Now, try it....and keep those wonderful "Well Wishes" coming ...



Kitty Allen

In Her Own Words ...

Note to Readers: Debra has asked specifically that I post her recent unedited comments below:

Kitty - thanks SO much for posting debradanburg.blogspot.com

I've gotten dozens of cards from folks telling me they are checking it daily, and while I'm stronger every day, I don't have NEARLY enough energy to talk with more than a few each day, - and keeping so many well-wishers informed would be exhausting.

The flowers and jokes have truly lightened my spirits. My favorite joke so far shows a bunch of goofy looking (traditional all-white-male) surgeons surrounding a patient undergoing surgery, and one says. "maybe we should try jiggling the liver".

Laughed so hard, I hurt!

I'm PARTICULARLY appreciative of the beautiful blooming plants I've received - bromeliads, azaleas, and from Marty and Jennifer, one of the most gorgeous (and biggest) orchid imaginable!

May sound like a bit much now, but I hope to have the energy to volunteer our home for the "Back Yard Tour" benefiting "Clean Galveston", and these beautiful blooming tropicals surely will make up for some of my usual Spring planting that will be beyond my abilities this year.

Next hurdles - radiation and chemo - but I'm told that the protocol for this type of cancer is much less debilitating than for others. No hair loss / little or no weight loss - just some fatigue. And one of the CT scans showed an enlarged cervix, so I'll be checking that out in a couple of weeks.

Please convey my appreciation to your readers, and please keep up the support and prayers. Thanks again!

Love you, D2

A Beautiful Day in the Neighborhood ...

Bob reports this afternoon that Debra is doing just great! She was up most of the morning, had a nice lunch, ventured down the outside stairs and actually walked about a half-block in the neighborhood on this beautiful spring day!

She is also enjoying very much the posted comments to the blog. Please feel free to pass the address (DebraDanburg.blogspot.com) along to others whom you know would like to send their 'well wishes.'

Cards can be sent to: 1828 Avenue M, Galveston, Texas 77550.



Kitty Allen

There's No Place Like Home ...

Sorry for the lack of updates recently...your 'reporter' here was without internet access for 4 days!

All in all, it was a pretty good weekend for Deb....And, after a 'real food' lunch today, our girl was discharged to home -- a full day earlier than expected! She even managed to make it up the stairs just fine...(and much to Bob's relief)!

After getting settled back in bed, she's been enjoying reading all the cards she's received over these past several days. She's also bossing Bob around again...so you KNOW she's feeling better!

The test results received on Friday were not altogether perfect, but still extremely encouraging. From all reports, the surgeon is very pleased with her recovey progress to date and the oncologist is also very positive about her prognosis. It is expected that Deb will begin further treatment (e.g. radition and/or chemotherapy) in about 8 weeks and after she fully recovers from the surgery.

In the meantime, please keep those cards and letters coming ....

To post your well-wishes here, simply click on "post comments"...enter your comments in the box...select "Other" and fill in your name (ignore web site address)...be sure and click on "publish comment" at the bottom.



Kitty Allen

A Room of Her Own ...

Debra continues to improve from her surgery! Late this afternoon, she was transferred out of ICU and into a "Mardi Gras" decorated room. Laissez les bon temps rouler!

Bob reports she's been sitting up in the bed (and the chair) this afternoon and is in good spirits. He indicated she may even be discharged home early next week.

If you'd like to send a "Get Well" card or flowers, please send them next week to:

1828 Avenue M
Galveston, Texas 77550

This will help ensure delivery and provide Deb with the best opportunity to enjoy them.

In the meantime, please know Debra will be getting some much needed rest over the next several days and how much she and her family all appreciate your kind and generous words and expressions of support.

More updates tomorrow ...


Kitty Allen