Back to Tulsa...

I spent a wonderful morning with Regina at our favorite tea house before she took my Mom and I to the airport to leave for Tulsa. Regina has to work and take care of Brittany, so my Mom is helping with my care.

On Thursday and Friday, I went to the necessary appointments to schedule chemo and fortunately my blood counts stayed high enough that I was able to get my first chemo on Saturday.

Home With My Family At Last!

I really cherished the four days I got to spend with Regina and Brittany. I was not up to doing much besides just enjoying our time together. We also enjoyed visits from our family and friends.

Squeezing In an Unconventional Treatment Before Flying Home!

Our flight to Portland does not depart until 1:00 PM, so I decided to

visit a Tulsa Health Clinic for Hyperbaric Oxygen Therapy. I was placed into a chamber which was pressurized to 1.5 atmosphere with 100% oxygen for 60 minutes. Hyperbaric Therapy has many uses, but I am undergoing the treatments to stimulate blood production. My blood counts have never recovered from the previous chemotherapy and radiation I received in 2008 & 2009. Low blood counts (white blood cell & platelets in particular) have prevented me from undergoing any further conventional chemotherapy treatments.

Finally Released

Late Tuesday night after the surgery, I developed a significant temperature which indicated an infection due to the stagnant bile entering my bloodstream. Intravenous antibiotics were immediately administered while blood samples were being cultured. I would have to stay in the hospital until I had a normal temperature for 12 hours minimum. My fever finally broke at 5:00 AM on Thursday morning and I was released later that afternoon with a five day prescription for oral antibiotics.

I was scheduled to receive chemotherapy today, but its not going to happen because I cannot receive chemotherapy until after I have completed the antibiotics.

We have decided to return home to Portland during this five day intermission.

Stint Surgery

In order to eliminate the biliary drain bag and re-establish bile flow, a stint will be installed at the location of the common bile duct blockage to reinforce the duct so that it can drain properly. Unfortunately, the surgery did not go as planned. The proposed coated stint would not fit my anatomy and so an alternate uncoated stint was used. Worse, when the biliary drain was removed the interventional radiologist realized it had been placed through a portal vein or artery, a very serious problem that could not be fixed during this surgery.

In order to complete the surgery, the drain was re-installed and capped off until a later procedure could be scheduled to repair the portal artery or vein. I will stay in the hospital for 24 hours for observation and be released on Wednesday.

Lazy Weekend in Tulsa

Instead of returning to Portland as previously planned, I decided it would be wisest to spend the weekend in Tulsa recuperating from the surgery and making sure I did not have any infections. Unfortunately, this would mean I would have to miss Brittany's children's musical at our church. She had a lead part & sang a solo.

The highlight of the weekend was the Sunday morning service at Victory Christian Center & lunch at a Thai restaurant. My Mom & I spent the rest of the weekend taking short walks on CTCA's nature trail & relaxing at the center.

Pleurx Abdominal Drain & Biliary Drain Surgery

At 3:00 PM, I checked into the CTCA hospital for surgery to install a pleurx abdominal drain & separate biliary drain. I decided to have both done at the same time, so I could speed up the timeline until I could receive treatment & to avoid separate recovery periods.

The surgery began with the installation of the pleurx abdominal drain to deal with the recurrent ascites (excessive accumulation of abdominal fluid) that has recently developed. The drain is a soft, semi-permanent catheter which was installed by CTCA's interventional radiologist just below my bellybutton. I will be accessing this drain by myself at home every other day and will hopefully be able to minimize my discomfort as well as frequent trips to the hospital to drain the fluid by puncturing the peritoneum. The surgeon was then able to drain 3 liters of fluid with the new drain.

He then proceeded with the installation of a biliary drain which was placed at the center of my right side ribcage. The drain consists of a small flexible rubber tube catheter placed into my blocked common bile duct (the passageway for the bile to flow from the gallbladder and liver). The installation of the drain did not go smoothly and required several attempts due to my uncommon anatomy. The tube will be connected to a drainage bag for several days for monitoring and then will be removed once a stint is placed at the blockage in the bile duct (separate surgery).

Despite the difficulties installing the drain, the surgery was completed successfully in about 2 hours. I woke up from the anesthesia in horrific pain, causing my body to go into shock. I was shaking violently for over 30 minutes before they were able to gain control. Fortunately, I only remember bits & pieces of that time. I will stay in the hospital for 24 hours for monitoring & will be released on Friday.

Out of Intensive Care

I continued to be in much pain due to the excessive fluid on my abdomen (ascites). Finally, after four days of waiting, all of my pain was drained away! A large needle attached to a vacuum bottle was inserted through my peritoneal lining and almost 2 liters of fluid was drained. What a difference that made...for about an hour. I soon realized that the draining of the fluid was not a permanent fix. I was discharged from the hospital at noon. Round 1 - Over.

Changing of the Guard

At 7:00 AM I received a bedside visit from my Gastroenterologist, who informed me that he had modified his schedule, so that he could perform an Esophagogastroduodenoscopy (EGD) at 11:00 AM to determine where the bleeding was coming from. The EGD procedure utilizes a small flexible endoscope introduced through the mouth to check for problems in the upper digestive tract. The procedure is performed while the patient is under sedation. It went very well and he determined that the bleeding had already stopped and was most likely the result of some esophageal verices due to excessive pressure in the common bile duct which had become blocked. The Dr. relayed his finding to my friends. He told me at a subsequent appointment that I had the most awesome friends he had ever met.

I woke up just in time to say goodbye to Aaron, Bobby, Mark, & Peter who were headed to the airport. The weekend was nothing like we had planned, but it was wonderful to have their loving & caring support during this traumatic time.

A few minutes later, my Mother arrived from Portland, Oregon. She dropped everything to get on the first plane to Tulsa when I asked her to come. She arrived just in time to get me some food from the cafeteria, as I was cleared to eat for the first time since Saturday morning.

She was quickly brought up to date as almost all of my doctors came to the room to discuss the new findings. We visited until almost 11:00 PM, when she checked into my outpatient room at the center. CTCA is set up great for visiting family members as they provide accommodations at the treatment center.

Devastating Test Results

On Sunday morning, the attending physician discussed the findings of Friday's PET/CT scan. I was informed that the pancreatic tumor had enlarged to the point that it is blocking the common bile duct, causing the jaundice & elevated bilirubin levels.

The scans also revealed that my abdomen was retaining a large amount of fluid, a condition called Ascites. Over the last two weeks my abdomen had slowly become more and more distended limiting my ability to eat, lay down, and breath deeply.

Most significantly, my previously pristine liver has now developed multiple tumors on both lobes in less than 60 days. Radiation is no longer an option. Where to go from here?

My Friends Are Coming To Visit This Weekend

Four of my best friends from Los Angeles, California are coming to spend the weekend with me! We spent a lot of time together during my employment at KPFF Consulting Engineers during the mid 1990's in Santa Monica, California. We have enjoyed many weekends together since I left KPFF and started my own engineering business in Portland, Oregon. In fact, they came to Tulsa to visit me when I was first being treated.

Unfortunately, on Friday night I started to bleed internally as evidenced by significant black stools. By the time they arrived on Saturday, it had progressed to the point that I needed to seek medical attention. I met with the doctor and made a deal that I would spend the day with my friends and check myself into the hospital that evening.

We had a very enjoyable day catching up over lunch on the Tulsa Riverfront and watching the Los Angeles Lakers playoff game.

I checked into the hospital as promised that evening looking very jaundiced, and my faithful friends stayed with me until almost 3:00 AM, when I was finally asleep in the intensive care.

Surprise...Surprise!!!

On Wednesday, during my appointment with the radiation doctor to discuss the treatment schedule, I was informed that the blood work completed earlier that day revealed extremely elevated liver enzyme & bilirubin counts. The radiation was put on hold, and a PET/CT scan was ordered on Friday morning.

Returning to CTCA for Tomo Radiation

In early November 2009, after a nearly 9 month break from chemotherapy and almost 17 months from the date of my original diagnosis, we discovered during a routine checkup at the Cancer Treatment Centers of America in Tulsa, Oklahoma that my blood tumor marker (CA 19-9) was beginning to rise once again above a normal level. Over the past few months the tumor marker has risen from 50 to over 2584. I have not been able to proceed with any chemotherapy treatments due to exceptionally low platelet & white blood cell counts, which have not recovered from the extensive treatment I previously received at CTCA.

A PET scan in mid December identified an active area in the pancreas at the original tumor site. I spent the next few months pursuing multiple naturopathic remedies in an effort to improve my blood counts, so that I could proceed with traditional treatments. However, the blood counts have remained low and the only treatment option available was a second round of tomo radiation, which is scheduled to begin on May 5, 2010.