Friday, January 30, 2009

Chapter Fourteen: Home We Go, on a Plateau

Sunday, January 25 through Friday, January 30

Mom and I had discovered a unique breakfast spot in Emory Village. While she and Dad packed and prepared for the trip home, I drove there to pick up carry-out. I hauled a box along in case I needed it for beverages.

Sitting on a bar stool at the counter eating area near the rear entrance, I placed our order. As usual, the Rise and Dine was crowded with hungry patrons enjoying the unique omelets and specialty coffees. As the exotic beauty placed two beverage trays and two carryout bags on the bar, a college student sitting nearby made an offer.

"I'll help you carry that out to your car."

I gratefully accepted and placed the beverages in the box. He had done his good deed for the day, I told him.

On the return trip, I watched wistfully as families crossed the road to the cream-colored church, small children in tow and toddlers in arms. I'd forgotten it was Sunday. At home, I'd be on my way to Sunday School and would sing in the choir. It gave me a good feeling, though, to see so many people eager to worship God.

Gathered around the desk-table, we enjoyed breakfast together in the room. By noon we were on the road with all our belongings, Mom ensconced in the back seat and Dad reclined in the front seat. She slept longer than he did, and a bit of Dad's conversation was enough to keep me alert.

We unloaded the car at their house, then I said goodbye and headed home. All of us agreed, talking by phone, that it would be great to sleep in our own beds.

Every day I talked to Mom, but the first few days, Dad didn't want to talk on the phone. On Thursday he answered the phone. His voice was hoarse and rather toneless, but other than that he sounded fine. He seemed disappointed his appetite wasn't better and he still needed pain medication. I encouraged him to give it time.

Ben Haden called me. He hadn't been able to reach either of my parents and wanted a report on Dad's progress. We talked several minutes, a pleasant conversation, and I assured him I'd give them his love.

Mom told me today Dad called work and told the girls in the office he'd be back in two or three weeks. She was skeptical about two weeks. I'm just glad he was talking positively. He's been somewhat listless and isolated, by his own choice, this week. Recovery is more than a physical process. It's also psychological, emotional, and spiritual. I'm praying he will continue to improve in each of those ways.

Sunday, January 25, 2009

Chapter Thirteen: Better News

Saturday, January 24

After catching breakfast at Evans', we gathered up Dad's things he might need, valet parked near the front of the hospital, and I wheeled Mom up to his room.

Dr. Sarmiento had already made rounds. Dad asked him how many Whipples he did in a year. Last year he had done 75. Dad told me Johns-Hopkins and Massachusetts General had each done about 150 Whipples per year, but using around six surgeons. Dad, Gary, and John Galloway believe Dr. Sarmiento is in the top three as far as how many of these operations an individual surgeon performs.

In past times the surgeons only took out 4-5 nodes for the pathologist to dissect from the block of tissue extracted. Dad had 29 nodes removed. Only one was positive for cancer cells. Dr. Sarmiento asked how Dad was doing. He admitted to the surgeon he was down, feeling discouraged. Dr. Sarmiento said he shouldn't be discouraged. Virtually all the people he operate on have cancer of the pancreas. The pathologist who works closely with the surgeon is an expert on cancer which originates from IPMN--introductal papillary mucosin neoplasm--which is the type first identified on Dad, in the mucinous cyst seen by MRI and CT, before his scope in South Carolina. He told Dad this was just about the smallest cancer he has seen.

Dad shared with Mom and me the two most encouraging signs from Dr. S.:

1) the very small cancer was a significant prognostic indicator
2) Dr. S. and his pathologist say this cancer is almost certainly not a typical pancreatic cancer.

The IPMN-generated behave differently. For those who don't have IPMN and have pancreatic cancer originating in the ducts, the five-year survival rate is less than 15%. If the cancer started as IPMN, which apparently was the consensus at Emory, Dad has better than a 50% chance of surviving five years. In the broad spectrum of patients, those with "garden-variety" pancreatic cancer have a 10% chance of survival.

Mom, Gary, and I all asked, how can you be sure the tumor was IPMN-originated, just because it was near the other tumor found in the node? Good question, Dad agreed. He plans to follow up on the path report, which didn't give the details on why those involved in the pathology study had drawn the conclusions they did.

Part of their reasoning may have been because the original tumor and the node tumor were smack together--too much to be a coincidence? Was there some kind of transition? It's unlikely two different types of tumors were that close to each other.

Dad explained to us that his tumor was considered a T-3, because it was 2.2 centimeters, but it was elongated, like a flattened, misshapen pancake. In some places it measured 1.5. The outcomes are poorer for a T-3 as opposed to a T-1 or T-2.

N-0 would indicate no nodes with cancerous cells. Dad was barely N-1, which means lower risk. Most of the data is applied to a different type of tumor, so it may not be accurate applied to his case.

The positive node found in Dad's tissue was near the original tumor. Samples were taken of different groups of nodes further from the specimen. Several node groups beyond the positive tumor were clear. When Dad described this to Gary on the phone, he said, "I'm in a class by myself." Mom and I heartily concurred.

John Galloway stopped by and stayed awhile. He said, "As a physician, with the circumstances of your cancer, I might say you didn't really need to take the chemo.

"But as a patient, having experienced near-fatal cancer myself, I would do it. When I heard the chemo and bone marrow transplant would only increase my chances of long-term survival about 10 %, I wondered whether it would be worth it. But I realized I didn't want to look back and regret not doing all I could to live my life to the optimum."

He pointed out that perhaps Dad had a higher likelihood at age 79, nearly 80, of dying from something else other than pancreatic cancer, but he encouraged Dad to take the chemo.

As for Dad's questions about the origin of the cancer, to John it appeared it was contiguous with the IPMN, so it is probably the same type of cancer. John agreed that the moderate nuclear grade (not fast-growing or wild) and the small size were also good signs.

John, a myloleukemia survivor who experienced several close brushes with death, said wryly, "Dr. Hixson , your chances for survival are probably a lot better than mine."

Dad finished his lunch as Mom packed his things. The nurse removed his IV line for the last time. The tech brought his huge plastic chariot/cart, and we loaded him and all his belongings. As we followed him down the hall, me pushing Mom's wheelchair, Elaine the tech and Jean the nurse were there to tell us all goodbye. I got tears in my eyes as I thanked and hugged them. They took such good care of my dad at Emory.

Dad enjoyed resting in the hotel room, Mom as well, while I tracked down his over-the-counter meds and pain medication. The CVS at Emory Village gave me directions to a nearby CVS in Druid Hills where I was able to get his pain prescription filled. After resting, I got us all a carryout from Evans.

We were just finishing dinner when Gary surprised us with a visit. It was a fun family evening.

Friday, January 23, 2009

Chapter Twelve: How to Be Realistic and Optimistic--at the Same Time

Friday, January 23

After another great breakfast at the trendy little Emory Village restaurant, Rise and Dine, Mom and I entered Dad's room in time to meet Dr. Kauh (pronounced "Ko"). He is a hematologist/oncologist at Emory. In Dad's recap to the doctor, I heard for the first time that the original tumor targeted by the surgery was actually larger than the scope showed. It was longer, 2.2 cm.

Dr. Kauh agreed that the node with the tumor being close to the first tumor was good. He said radiation is controversial. Europeans don't believe in it. They chose to do their trials with chemotherapy, Gemsar, alone. The German study, which included hundreds of patients, made much more sense, however, than an American study which only used 43 patients, due to the doctors' bias against enrollment.

Chemo and radiation had been standard care until the last three years. In 2003, patients treated with chemo only did best. Chemo plus radiation was 2nd to last. Dr. Kauh's inclination with clean margins like Dad's is to shy away from radiation.

The regimen he uses--standard with most oncologists currently--is Gemcitabine (produced by Eli Lilly as Gemzar) . Most patients respond with few side effects. Normally they experience flu-like symptoms for two or three days after treatment. The protocol is once weekly for three weeks in a row, then one week off. Blood counts are taken to ensure the patient remains healthy.
This goes on for six months, with a total of 18 treatments. The window after surgery is 4-8 weeks, depending on the individual's progress.

The doctor told Dad he was doing great, with no IV (the nurse removed it today but kept the connection in case needed) and no nasogastric tube.

Dr. Kauh was very matter-of-fact, reminding Dad that pancreatic cancer has a high propensity to recur. But he also pointed out that out of all 30,000 cases diagnosed annually, only 15% are local tumors which are operable. Of those, only 10% will be resectable (able to put remaining parts of pancreas back together with other organs). So Dad is already in the top 10% of pancreatic cancers.

After the doctor left, Dad told us Wendell had called. He had eaten a few bites of scrambled egg for breakfast, along with a little biscuit and a fair amount of grits.

Rolanda came in to take Dad's vitals and told us she loved Chattanooga and had visited many times.

Dad's lunch tray arrived. Food, drink, even water, tasted funny to him, probably side effects of meds and anesthesia. He did eat a smattering of most of the foods and requested a chocolate milk, which showed up an hour or two later.

Dad and I took the usual walk. He was eager to talk about the iffy prognosis and the fact that instead of the actuarial prediction based on his overall health and condition that he might live 9 more years, perhaps he only had 5 or less. Yet he really didn't know.

He said, "This puts my life in perspective. I know my time may be more limited than I thought. The important thing is to live each day as though it's your last. I need to find out what the Lord wants me to do in the time I have left--and do it."

After his walk, the pain meds started to kick in, a good thing with his incision hurting, so he settled in for a nap.

Later, Gary came and entertained us with funny stories about Trey and the pictures on his camera of his family taken by a photographer friend last weekend when their whole family was together.

Mom and I met Gary, Sherry, and Laney at Athens Pizza for dinner, and we laughed some more.

As Mom and I made a couple of errand stops on the way back to University Inn, she expressed her fears and shock.

"You know, I thought maybe one day your dad would have to have open heart surgery. But I never dreamed of anything like this. I don't think he's really grasped it yet."

I told her, "I think denial is normal. I'm not thinking of it as real yet myself. I know what the statistics about pancreatic cancer say, but I also know that God is greater than statistics, and people are individuals."

It was good to talk to Flavia today and touch base with home folks. I was glad to speak with Billie about her loss, knowing we are not the only people going through difficult times.

Chapter Eleven: One Foot in Front of the Other

Thursday, January 22



Sometimes it's discouraging to keep going, when nothing seems to happen and the news isn't what you'd hoped for. Dad couldn't get his colon going on a regular basis. Worse, he'd insisted on the pathology report being delivered to him personally, and the surgical intern, David, brought it to his room Thursday night, after Mom, Gary, and I had left. He called Gary to get his take on the report.



It was good, and it was bad. There were 28 lymph nodes tested from Dad's surgery. One had a tumor. With any cancer, lymph involvement isn't good. But it was only one out of 28 and located near the originally-discovered tumor. Both had been removed. There was no perineural invasion, also a good sign. The grade of the cancer was moderate, rather than aggressive, meaning a slower-growing cancer.

Dad and I took our customary tour of the floor, right after Dad swallowed his pain meds. With perfect timing, after about 20 minutes of walking, Dad followed the delivery of his lunch tray into 1009.

Lunch was a production, because Dad's blended vegetable soup was, as he put it, "blended spices with too much pepper and tumeric." He discussed this at length with Leith, Dr. Galloway's P.A. They talked about consulting with a dietician (not necessarily about the soup!) and a medical oncologist.

After Dad's "mediocre" lunch, he wanted a bath. Laura the nurse would switch his IV from right arm to left but leave it out until his bath was finished. He was glad to take his first shower since before surgery. The orderly then showed up to take Dad for an x-ray.

While Dad was out of the room, Mom told me she had read the path report and talked to Gary. He felt the one lymph node was significant. It upset him, because he had talked with an oncologist friend who works all over Atlanta, and she did not give him encouragement about survival with pancreatic cancer.

I know statistically things don't look great. But individual lives and God's plans often foil statistics. I'm praying for people to work for Dad during recovery and chemotherapy, so he can keep doing what he loves, stay positive, and feel like he's making a contribution.

Wednesday, January 21, 2009

Chapter Ten: Can't See the Forest for the Trees

Wednesday, January 21

After a late start and breakfast and a call from Dad to bring bottled waters, we hit the Coin Laundry on North Decatur. Once Mom and I had stashed the dry clothes and hung the damp ones everywhere, over furniture and hangers and the shower, we set out for Emory University Hospital.

Dad seemed okay yet disappointed with the fact that he wouldn't be released on Thursday. He felt pretty sure the doctor would allow him to leave Friday. He caught us up to speed:

1) His epidural was capped, as planned, at 6 a.m.
2) He felt perky at 7 a.m.
3) He disconnected his IV cart, put his robe on, and started hiking.
4) He was rolling along after 6 laps and planned to continue--until he saw his tray arrive at 7:25.
5) He felt fantastic--of course the epidural continued its effects for 2 hours.
6) He ate, and a little pain began to plague him.
7) He had been given two pain pills for the transition, but hurt a little more later.

Mom was chomping at the bit when Dad said he was going to give us an update on the doctor's report. He wanted water first. She accused him of being dramatic, but the pain meds were slowing his thought processes.

Finally he got out that the pathology report was still unavailable. Dr. Sarmiento had come in mid-morning with an entourage, including the intern David Liang and a fourth-year resident, whose name Dad couldn't recall. The bottom line was that there was no way he would go home Thursday. If he was able to eat at the next level and no complications developed, he would certainly be released Friday. They encouraged him to stay around town for a day, to make sure he was okay.

They also discussed chemotherapy with Dad, and he saw it wasn't considered optional, no matter the results of the path report. He would find a place in Chattanooga to receive the Jemsar, alternate weeks. It would probably affect him for two or three days, as most patients had few side effects from this drug, but it could vary. He would need 12 treatments, which would be distributed over six months. The good news? Administered to all patients with pancreatic cancers, no matter the extent, Jemsar doubles the survival rate for a five-year period.

The time he would begin chemotherapy is yet to be determined. He hopes the pathology report is available Thursday. A pancreatic pathologist who works closely with Dr. Sarmiento has been studying the tissue.

Dad mentioned an oncologist in Chattanooga whom he might choose. The protocol for the Jemsar treatments was worked out in Germany. At least four people Dad or Gary have consulted in the past two weeks quoted the German study on the effectiveness of the Jemsar treatments.

One consideration of the timing of the treatments was Dad's work schedule. He wondered whether he could take treatments late in the week and work again by the next week's beginning. Mom and I pointed out to him that it would be difficult to know exactly what worked best until he'd undergone a treatment and seen how it affected him. He agreed.

Dad seemed somewhat discouraged by the news and the lack of news, by the lack of bathroom activity, and by the food. Mom and I hoped for a better day for him tomorrow, though it seemed to be a decent one from our perspective. He had handled very well the transition of the pain meds from epidural to oral. He was eating fairly well.

With two fewer tubes--his catheter and epidural gone--Dad could manage his robe by putting his free arm into the sleeve and draping it over the other shoulder. We walked and talked, as he pushed the IV cart, until the food tray carrier neared his room. He stopped to negotiate with the dietary worker. He wanted a vanilla pudding to replace the chocolate.

We ended up nearly pulling his stitches out while he tried to eat. Mom and I narrated our sighting of a housekeeping cart upturned and the laundry spread out to dry over various furniture. I told a funny story from one of the family vacations Steve and I had taken with our kids. We were all laughing hysterically when Gary walked in.

Mom and I visited a while with Gary, then grabbed dinner while he was with Dad. When we returned, I misunderstood a message from Eric. We waited, thinking he was coming, but a phone call proved it was TOMORROW he'd be in Atlanta. Gary had left. Dad was sleepy and not up to a walk, so Mom and I called it a night.

Chapter Nine: Watching Grass Grow

Tuesday, January 20

Mom and I arrived in 1009 to see Dad again sitting in the chair, feet pillowed and resting on another chair. He had hustled ten laps earlier and made two grateful bathroom trips.

Lunch came. Dad was already tiring of the liquid diet.

David Liang, the surgical intern, came and discussed Dad's case with him. IF--and all was conditional--Dad could manage pain without the epidural, lose the Foley catheter, get rid of his abdominal distension, have regular bowel movements, and convert--gradually--to a soft food diet, he would be dismissed Thursday. Everything would have to happen pretty quickly, considering where he was today.

Mom and I learned, after trying to reserve our room for longer, that we would have to change rooms, and then we would not be guaranteed a room after the first extra night (Wednesday). Emory Inn was sold out through the weekend.

I called University Inn, at the other end of Emory's campus, and we reserved two rooms Thursday through Saturday. Guess Thursday is Moving Day!

Dad's epidural meds were increased in a gradual distribution, with the option of a bolus--a sharp, one-time increase. His pain was bothering him, causing him to be irritable. His spirits, unlike yesterday, seemed low.

We watched various parts of the Inauguration and accompanying festivities on Fox News throughout the day, with some lively commentary from Mom and Dad.

After his liquid lunch, I followed Dad on fourteen laps. He was cheered on by Elaine, Laura, Jean, Margaret, and all the other techs and nurses on his floor. Elaine said, "You're looking marvelous, Dr. Hixson."

Druing his walk, I noticed the fluit in the catheter had turned pinkish-red. We reported this to Jean, his nurse for the early part of the day. She sent Laura, who was taking over. Laura joked, when my dad suggested talking with the surgical intern David, "I might not have thought of that myself."

Laura returned. My dad had a choice--go ahead and cap the epidural, give him two Percoset, and wait three hours to see how he would do, or follow the orders currently in place: cap the epidural tomorrow at 6:00 a.m. Either way, three hours after the capping, if he was managing pain acceptably, the catheter could be removed. At this point Laura doubted there was any infection from the catheter--only some trauma and irritation. She was probably right, as the bleeding seemed to stop after his brisk walk.

Dad asked if she could order him a Dulcolax for later to stimulate the colon.

Laura said, "Why do you want dynamite to 'do the job?' It's gonna happen on its own."

He said, "I'm a little impatient."

I laughed. "As if she couldn't tell."

"You remind me so much of my dad, " said Laura with a laugh. "I don't know whether I should kiss you or what! Just give it time."

Later, Gary came to visit, and a few minutes after, Sherry brought in Laney and her friend Liz for a brief stop. Gary stayed after they left, and he had a long talk with Mom when I took Dad for his next walk--after the suppository he'd wanted.

Dad went straight to the bathroom from his laps. Gary was willing to help so Mom and I could leave for our dinner reservations at the hotel. Sherry, he assured us, would bring him carryout home so he could rest.

Mom and I had a pleasant dinner at the quiet Le Giverny and retired for the evening.

Chapter Eight: Red-Letter Day

Monday, January 19

Dad called early from the hospital, "needing" Pilot pens and moisturizing cream. He was excited that the intern had heard activity in his abdomen.

After our Evans' breakfast and quick shopping trip, Mom and I made our habitual trip to Emory Hospital. As we told Adrian, "another exciting day of watching the IV drip" (and my parents nap!). It turned out to be a stellar day.

Dad was up in his chair with feet propped on the other chair's footrest, his head leaning against an improvised towel-pillow taped to the wall. When he'd just settled into bed for a brief nap, some visitors we'd known were coming but forgotten about showed up--Ben Haden and Wendell Jones. We enjoyed wonderful fellowship, enhanced when Dr. John Galloway showed up. He was accompanied by a quiet pre-med student named Laura, who attends Erskine College, John's alma mater.

Dad was pretty wound up, feeling lots better than the previous day, especially since his pain meds had been adjusted to better encompass the top sector of his incision. As Ben and Wendell were about to leave, the tech who was to transport Dad to X-Ray knocked on the door. We asked him if we could delay a few minutes to say our goodbyes. Ben prayed with us before he and Wendell departed.

Dad returned from X-Ray elated. They'd allowed him to look at his pictures, and no obstructions appeared. All the backup appeared to be in his colon, he surmised, because he'd begun his pre-surgery prep too late in the day on Wednesday.

Then nurse Laura, whose own mother ironically had died from pancreatic cancer, sadly after being diagnosed in stage four, brought Dad the highlight of his hospital sojourn--a tray for lunch!
Of course, it was all liquids, but he did get a variety of those--apple juice, tea, beef broth, jello, and Italian ice.

Dad and I took off on his triangular laps around the floor and finished eight, so engrossed were we in conversation.

Trey came by before Gary was to drive him, Ann, and Jack to the airport for their flight back to Kansas. I'm so glad he came to spend time with Mom and Dad.

Chapter Seven: Sunday, But Doesn't Seem Like It

Sunday, January 18

None of the days since Dad and I first came to Emory last Monday for his pre-op appointments have seemed like any particular day of the week. And since Steve was with Mom and me this morning and not teaching Sunday school, it didn't feel like Sunday. We breakfasted at IHOP and returned Steve to Emory Inn to pick up his car. We all met in Dad's room.

Dad was happy he was about to receive a suppository (having surgery can make you appreciate the strangest things). He took a walk, had a bath, and happily made a bathroom visit, a pretty significant milestone after abdominal surgery. His tummy was still pretty tight, looking like a basketball, but he hoped for more "activity."

Mom and I took our snack break at the second floor vending area, sitting in the modern wood furniture in a small visitor's area beneath some contemporary blown-up floral photo closeups.

We tipped back into the room where Dad was snoozing, his unopened book on Bible prophecy at his side. Mom slipped into her nap spot in the armchair with the pull-out footrest.

After one more walk with Dad, Mom and I took off to look for dinner. We turned in for the evening after we happened upon a Chili's.

Monday, January 19, 2009

Chapter Six: Two Steps Forward, One Step Back

Saturday, January 17



Steve, Mom, and I continued the Evans ritual, then popped in to see Dad. Actually, we wheeled Mom up, because she was struggling with her leg and back after all the walking of our stressful day Thursday. Dad was ready for a hike. Steve and I followed him, his robe over his shoulders to shield his backside in the typically revealing hospital gown. The belly distension he experienced could be best relieved by walking. He broke his record of four laps around the triangular corridor by taking six.



We heard from Gary and Emily, and Dad called Ben Haden as well. Ben had planned a trip to Atlanta with Wendell Jones to visit Dad Monday. Gary's family was planning to visit, as was Emily.

Mom and I went to get a snack while Steve drove to the hotel to work. Then back in Dad's room, he was ready to walk again. He tooled around six laps pushing his IV stand. We resituated him in bewd, with the help of tech Michelle. She checked Dad's blood sugar. He was relieved to learn she didn't need to inject him with insulin this time. Those shots in the side of his belly were no fun.

Emily arrived to visit P-Paw, then we switched places with Sherry and Laney, who switched with Gary and Ben, who left to make room for Ann and Trey. Dad was delighted to see the family all in one day.

In the meantime, Steve, Mom, Emily, and I enjoyed holding and feeding baby Jack in the elegant hospital lobby.

Poor Dad was left to his ice chips with a swollen abdomen while the rest of us met at Alfredo's for a fun family dinner. But he was happy the family was spending time together. Mom, Steve, and I adjourned to the hotel.

I talked to Dad on the phone, after Gary answered, "Nurse Ratchet." Dad was about to speed around the ward's perimeter six more rounds. He was hoping for a "magical" suppository tomorrow, which David Liang, the surgery intern, said Dad would probably get.

Chapter Five: Beginnings of Recovery

Friday, January16

Mom and I breakfasted at Evans Fine Foods, the nearby little home-cooking restaurant where we'd met Gary, Sherry, her sister Pam, Trey, Ann, and Jack the night before. We had packed up Dad's glasses--prior to his urgent message sent via Emory staff!



Winsome, the personable tech from Jamaica (so many employees we met were from there!) got Dad up in a chair while she changed his bed. But since his blood pressure standing was only 79/50, he wasn't yet ready for a walkathon or sitting up for extended periods. We love her smile and lyrical speech.



Leith, Dr. Galloway's Physician's Assistant, told us she had only been convinced to leave New York State and turn down other offers, when she realized what a tight ship John ran and how respected his programs were. He has 500 patients from all over the world and treats people with Krohn's Disease, fistulas, and in need of reconstruction of the abdominal walls.

At this point Dad's biggest aggravation was the NG [naso-gastric] tube, which scraped the back of his throat and made it difficult to speak. He was trying to rest, so we lowered the windowshades. Dr. Sarmiento came by on his rounds. He was delighted with the surgery. Dad, as always, fired questions at him, from details about the pathology and length of hospital stay, to quizzes on the frequency and duration of chemotherapy.

The doctor looked at him, smiled, and said, "Dr. Hixson, I think you don't need to get ahead of yourself. We don't know yet that you will even need chemotherapy. Let's see what the pathologist finds and talk with the oncologist. Then we'll know more." He said the narcotics in the epidural pain relief could be reduced without affecting the pain, as Dad would still receive the benefits of anesthetics. After Dr. Sarmiento left, Dad disagreed with Mom's and my affirmation that he shouldn't worry yet about the timing of chemo. He was concerned about lining up people to work. We reminded him that God had worked out everything so far--why not work and chemo as well?

After Mom and Dad dozed, she and I took a lunch break in the cateteria and stopped by the gift shop, where she picked up a stuffed dancing dalmation. Back in the room, Elaine the tech bobbed her head in time to the tune resounding from the dog, "Do You Love Me, Now That I Can Dance?" My dad seemed to enjoy entertaining everyone who came into the room by making the dog perform.

Around 4:30 Gary stopped to visit for awhile. Yvonne, Dad's nurse, told him she was taking the long weekend off. When Dad expressed his disappointment that she wouldn't be taking care of him, she promised to tell him goodbye if he left before she could settle in to his case again. She introduced him to Juanda, his night nurse, who was already kidding with him when we left with Gary.

Mom and I were becoming regulars at Evans'. I ordered food to go for Steve, who later blew in from the cold and a long day of CVS challenges, a funeral, and the drive from Nashville to Decatur to join us at Emory Inn.

Friday, January 16, 2009

Chapter Four: Surgery Day Arrives

Wednesday, January 15

Wednesday nite we finally got on the road before 9 p.m. My passengers (Mom and Dad) napped, and by Calhoun, my brother Gary had called.

"We've secured the baby." He had picked up my nephew Trey, Ann, and baby Jack, just flown in from Kansas.

Right after we checked in, Gary showed up with his entourage.

None of us had met Jack before now. I was thrilled to snap photos of Mom and Dad with their first great-grandchild. We enjoyed visiting. We suddenly realized it was 1:30 a.m., with a 5:30 pre-op call for Dad. We bid our visitors goodnight. Trey promised he'd see P-Paw after his surgery.

*********************************************************

4:15 a.m. came too quickly. We sat in the waiting area for surgery patients' families and watched the tropical fish swim in circles in a rectangular, polished wood-based tank. 2 1/2 X 4 X 3 feet didn't seem enough space for all those fish, but they brought a peacefulness to that corner of the room. Chairs were arranged in all sorts of perpendicular and parallel seating areas. Throughout the day, people snored, chatted, talked on their cells, and huddled in groups to pray with pastors.


Dad followed the nurse to surgical prep, and after a long wait and an inquiry, Mom and I were led back to preop. The only rude person we've encountered at Emory was the nurse who hurried us to give Dad our kisses and say our goodbyes, presumably because she was more worried about the schedule than the people whose lives it affected.

Emory uses a computerized system to help update the waiting families. We had a pager, which we turned in before returning to the hotel for Mom's medication and to eat breakfast. For the time being, we left cell phone numbers. We were back in a short time. The big-screen TV used icons and codes, for which every family received a key with their patient's case number. Periodically, I would check the screen, and it would read, for Dad, Pt in OR, meaning Patient in Operating Room. We didn't expect his status to change any time soon, as we'd heard of this surgery taking 8 hours in the "old days" and up to 6 with Dr. Sarmiento.

Dad hadn't entered the OR until, we guessed, around 9, so we didn't expect to hear anything at 11:30. I returned from the restroom, and the helpful young man who had answered all our questions so patiently pointed me to a consulting room in the corner, telling me Mom was waiting there to speak with the surgeon.

This frightened me a bit, but I knew the interest Dr. Sarmiento had taken in Dad's case, with him also being a physician. We didn't wait too long before the surgeon entered from another door opposite the waiting room door. He was dressed in his blue scrubs, wearing his blue matching cap. He smiled and told us in his rich Colombian accent, "Everything went very well. We already did frozen sections of the margins [the edges removed around the part of the pancreas where the tiny tumor lay]. All those were negative for cancer. He lost little blood, needed no transfusion, and will not need to go to ICU. We'll have the final pathology on lymph nodes and the grade of the cancer by next Tuesday or Wednesday."

We expressed our gratitude and soon were able to see Dad briefly in recovery. It took a while for him to get a room, but he got one worth waiting for--a room with a view! 1009 is in a corner, with huge windows that meet at the vertex. The red roofs and pink and white marble of Emory's medical complex beckon out of one side and a tennis court, distant skyscrapers, and a mountain lure the eyes from the other side.

Dad wasn't too alert this first day, but he was happy enough that his epidural pain meds were keeping him comfortable.

Tuesday, January 13, 2009

Chapter Three: Another Manic Monday

Monday, January 13

Monday morning I picked up Dad before 5 a.m., and we headed down I-75 to his appointments in Atlanta. After a false start in the wrong building, we found the Emory Clinics and took the walkway to the hospital's pre-op. Here Dad would do all the check-in labs and paperwork. He hadn't eaten breakfast (fasting for all the planned tests), and I'd only had cinnamon toast and coffee. Even though we began the process at 7:30, we had to call the surgeon's office and tell them we'd be late for his 10 a.m. appointment.

When Dad entered the exam room, with me in charge of his jacket and extra papers (he'd meticulously hand-copied his records and history for all the medical people we'd see that day), he was visited by a barrage of nurses taking blood and histories. He wasn't enthusiastic about the blood-drawing, especially when he learned they would take it again two hours after his glucose drink. All these women were friendly, compassionate, and extremely thorough. The anesthesiologist listed to his aorta, heart, and lungs and checked his thyroid and neck. He told her about his heart murmur, which she heard, and explained about his various medications and supplements. With the parade constantly entering and exiting the room, two hours passed quickly.

Around 11-11:30 we hiked back to the A-Clinic to the surgical waiting area, a hexagonal room filled with various seating areas and flanked by three types of surgical counters with three desks each. Dad checked in--after we finally figured out it was general surgery we wanted and actually signed him in the right place. We waited. And waited. I asked one of the desk ladies what we should do, since my dad had an appointment with the cardiologist, originally at 2:00, then moved up to 1:30. She told us Dr. Sarmiento moved his patients steadily and to see her again if we weren't called back by 12:45. In the meantime, I'd discovered an apple from our hotel in Charleston still hidden in my voluminous purse. Apologizing to my dad, who still couldn't eat in case he had any more fasting-necessary tests, I gobbled the apple.

Just in time, we were called back to Dr. Sarmiento's examining area. If my dad was already sick of people taking his blood pressure, he didn't let on. Again, two lovely ladies--the one who escorted us to the room, and the one who talked to Dad and took vital signs.

Then Dr. Sarmiento entered the room (which I am sure was AIR-CONDITIONED on a chilly winter's day). He spoke softly, telling us one fact after another about his Whipple surgery:

1) typical operating time 6 hours or less--we'd heard some were 6-10

2) preserves the pylorus--so the stomach stays intact. As Dr. Sarmiento puts it, "the way God made you." He says it makes no oncological difference [no different outcome with cancer]

3) vertical incision, smaller than typical--less to recover from

4) NO DRAINS, NO FEEDING TUBES--this thrilled my dad! He's heard scary stories about abcesses, much less grimaced when he imagined these tubes protruding from his abdomen. And Dad is all about real eating (which you can't tell so much by looking at him).

5) patient is up the next day, eating ice chips the first day, and usually rid of the NG cath by the day following surgery

6) typically removes more than 15 lymph nodes to test for cancer, usually 16-25

7) works closely with the pancreatic pathologist, whom he considers tops

8) seldom transfuses patients or puts them in Intensive Care

9) 6 days is the median length of his Whipple patients' hospital stays

10) out of last 100 patients, mortality rate around 2%

11) pain management is better with an epidural cath

12) confirmation of Dr. Esnaola's info about Jemsar, the chemotherapy cited in a significant
trial--if given to all comers, it doubles the survival rate. And its side effects are minimal.

Lucky 13) performs about 75 Whipple surgeries a year [Whipple surgery removes a part of the pancreas, usually to take out a cancer, and then resects the remainder of the organ with the surrounding tissue, including the jejunum, a part of the duodenum, also known as small intestine.]

He invited Dad across the hall to view the scope images together and discuss it.
We left feeling sure the Lord had worked out for Dad to have this surgeon.

Up on the third floor, we arrived to sign in at the cardio waiting room, set up similarly to the surgeon's area. Dad and I were led back to a room, where we knew the drill--questions about medication and history, Dad pulling papers out of his soft briefcase, blood pressure taken. Everybody, once again, was kind and friendly. A kid who claimed to be the cardiologist entered the exam room. His tag read, "Robinson Williams," and sure enough, he went by Robin! He felt everything would be fine with Dad's heart during the upcoming surgery, as no trouble had surfaced in many years. He agreed it would be good to have a recent ECHO cardiogram and arranged it for that afternoon.

More waiting in the chilly cardiac imaging suite (leather coat over my lap), as Dad went back for his stress ECHO. I was so hungry, I dug in my purse hoping to find something and turned up a tiny pack of airplane peanuts from our Charleston jaunt. An hour or so later, Dad was back. As far as he could tell, it went well. We received a call he would need to report to Clinic C at 8 in the morning for a carotid artery ultrasound. This changed our plans, as we had been Chattanooga-bound until now. Fortunately we learned this before leaving Emory.

We had talked to my brother Gary on and off throughout the day, and now he invited us to dinner. We checked into a nearby hotel on the Emory campus and followed directions to Gary's house. There we enjoyed pork tenderloin and good company--Gary, Sherry, Ben, Rico the Pit Bull, Laney, and her friend Rebecca. Mom called and gave us a message about a heart cath on Wednesday morning. This was both a surprise and a mystery to us--no one had informed us. We resolved to learn more from the cardiologist, Dr. Williams, on Tuesday.

I was thrilled to return to our rooms and turn in with a book--which I didn't read long. Lights out before 10:30! Dad later confessed he was up till midnight. Bad patient!

I let Dad out at Clinic C and parked. His ultrasound only revealed a bit of new plaque in his carotids, and he enjoyed meeting the tech who'd trained with my brother Gary and viewing the images with the radiologist. While waiting, I had called to update the church about the situation with the heart cath and ask for prayer about the surgery moving forward if it were safe to do so.

We were on our way to learn about the heart cath from the cardiologist when he called us. He was surprised to hear about it. He was only calling to report that the ECHO cardiogram had shown my dad's heart to be in great shape. He called me back in a few minutes, saying it must be some kind of mixup. Neither cath lab had my dad on the schedule. Relieved we picked up the kit my dad had left at the surgeon's suite and made a hasty retreat to IHOP!

We were able to rendezvous with Emily at a Taco Bell before she headed back to college.

I delivered Dad home, and he, Mom, and I began our individual preparations for the trip back to Atlanta on Wednesday.

I look back, and I marvel at the way God worked out every detail with perfect timing and gave us wonderful moments along the way--my visiting with Dad and having a chance to help him a bit after all the things he and Mom have done for me, plus the fun family time with Gary, Sherry, Ben, and Laney last night. Funny how the Lord can use that scary C-word to draw people closer and create warm memories.

Saturday, January 10, 2009

Chapter Two: Meeting the First Candidate

Wednesday, January 7

After the surprising revelation of a tiny malignancy on Tuesday, Dad and I met with the surgeon early on Wednesday. Dr. Esnaola looked young and spoke with knowledge and kindness. His physician's assistant, Laurie, was also thorough and compassionate. The earliest they could possibly schedule the Whipple surgery would be a week from that Monday. The doctor laid out for us every detail we needed to know and answers to my Dad's questions--yes, he had prepared quite a list for the doc--including the mortality rate for this particular type of surgery. He had only lost one patient to the surgery, a very poor surgical risk but a person with no other lifesaving options. Dad told Dr. Esnaola his only misgiving was that Charleston was so far from home, especially for follow-up visits after surgery. We both had nothing but praise for the wonderful work and staff at MUSC. Dad promised to call by Friday to let them know his decision.

The previous night my brother Gary had discussed an option for my Dad in Atlanta at Emory University with a doctor who operated with one of Gary's best friends. As we rode in the taxi to the airport, Dad and Gary talked again. Dad got contact information for John to learn more about the other surgeon.

Steve met Dad and me at the airport in Atlanta and drove us back to Chattanooga. My mom was up and dressed, which surprised me, as she's spent most of the past two weeks in bed with her back. That was why she wasn't able to make the trip to Charleston. I prayed God would strengthen her enough to be with Dad for the surgery. Sitting--or lying--around at home waiting for the phone to ring with news from South Carolina was no picnic for her.

After that, things continued to work out for Atlanta, with my dad potentially the first case on the surgical docket for this Thursday. He and I head out at 4:30 a.m. (not my idea of morning) on Monday for a doctor's office-hopping day. If all goes well, we'll get the meeting with his surgeon, pre-op forms and workups, an ECHO-cardiogram, and whatever else precedes the operation, out of the way by no later than Tuesday morning. That gives us a day and a half to get things in order at home and pack up for Dad's indefinite hospital stay.

God has blessed us with multiple prayer warriors and encouragers who are too many to name. Thank you, Lord, and thank you, family and friends.

Next: Chapter Three: Monday, Monday, So Good to Me

Thursday, January 8, 2009

Chapter One: Even the Expert Was Shocked...But Dad Recovered First!

Monday, January 5, and Tuesday, January 6

My dad calls himself a hypochondriac, but I think doctors often fall into this category on some level. After all, they've seen a bit of everything from the time they first opened up a medical text or a cadaver. So when his friend Wendell said casually, a few weeks ago, "Gordon, you don't look so good. I think you might have cancer," my dad took it to heart. He scheduled tests--starting with his own techs at the imaging center where he works and ending with MRIs and CTs that produced magnificent pictures.

The enlargement of Dad's pancreatic main duct and the appearance of a small cyst were cause for alarm. However, on Monday, when the doctor in Charleston who has refined pancreatic scopes to an art saw the CDs with the detailed magnified images, he assured Dad that it was likely a benign cyst. The mucous from the cyst had probably caused the duct to swell. Still, since we were there and my dad's scope was scheduled for the following afternoon, all would proceed as planned. If for no other reason, Dad could be sure everything was fine.

Not one to waste an opportunity, Dad got a recommendation from the doc for dinner, and we celebrated the end of four hours of filling out forms, answering questions, and traipsing from room to room in the medical center. (I have to add that everyone at MUSC treated us kindly and were thorough and professional in all they did.) Hank's downtown was no disappointment, and we enjoyed every morsel from the seafood bisque to the bread to the shellfish to the dessert and coffee. It's fair to say we waddled back into the hotel. Dad had to stop eating at midnight, and by golly, he was going to make the most of his chance.

After a pre-dawn travel start, we were glad for some rest at Marriott R.I.--Ripley Point, where my dad turned out to be "Guest of the Day." Dad slept in on Tuesday while I enjoyed the breakfast buffet. After all, he couldn't eat, so why get up? We caught the shuttle to Ashley River Tower, where we'd spent the previous afternoon, and he was prepped to have a scope inserted through the mouth. We wouldn't know whether the other procedure would be necessary for a biopsy until Dr. Hawes finished with the scope.

I had barely settled in the waiting area when a nurse fetched me back to recovery, the same curtained room where Dad had waited to be taken for his scope. He was waking up but not yet alert. After he'd begun to talk a bit and had been back nearly an hour, the doc and his Fellow (one of four applicants of 700 who was accepted) came in to check on the patient and discuss their findings. All of us were equally shocked to learn that another tiny mass, not a cyst, existed at the opening of the main pancreatic duct.

Dr. Hawes said, "It's 13 millimeters, the smallest we have ever seen." That sounded good. After all, they've seen thousands here. "It is malignant." Not so good. "We did four pricks of a needle biopsy, and it is almost certainly adenocarcinoma." Not good at all.

I was listening and trying to absorb what they were saying and what it meant. My dad has cancer. He will need surgery, major surgery, because pancreatic is one of the worst types to have and it's a tricky part of the anatomy for operations. Dad had previously showed me his own research--types of pancreatic cancer, survival rates, cure rates, and so on.

On Monday, when things seemed okay, I calmly took notes. Now on Tuesday in this unreal atmosphere I couldn't follow and write at the same time. I asked the Fellow to draw a diagram, because my dad was repeating the same questions, due to the anethesia. Dr. Hawes took my notebook out of the younger man's hands and drew me the anomalous two-separately-ducted pancreas of my dad, explaining what everything was and circling what the surgery must remove. I wrote beside the diagrams my own notes as he continued. It seems the placement of the tumor and the swelling of the duct made things better. The superior mesenteric artery was nowhere close to the mass, another advantage.

The doc gently rubbed my dad's calf as he talked to him about this somewhat-terrifying news. My dad, in his usual matter-of-fact way, took everything in stride. But we were both shocked, as he had prepared before for worst-case-scenario, then had been relieved to think the chances were slim he had cancer. Now this diagnosis.

The Fellow rubbed my shoulder as my dad and Dr. Hawes continued to discuss options. After the docs left, we waited per instructions for a copy of the report, dismissal papers from the nurse, and then blessedly, an appointment with the surgeon assigned for the following morning.

Lisa, the nurse, warned my dad to rest and eat light. He called the whole experience--the testing and the coming ordeal of fighting cancer--"another adventure." After he phoned my mom and my brother to give them the news, we took a taxi to Charleston Crab House, where he ate she-crab soup, salad, crab dip, fried shrimp, and Key Lime Pie. My dad doesn't do anything halfway. He knows he's in the Lord's hands. He may try to take over a few times along the way, but he knows Who really controls things and does the healing.

God used his friend Wendell as a mouthpiece. Dad told him, "Your honorary MD diploma's on the way, along with an award for Diagnostician of the Year."

Chapter Two: Meeting the First Candidate