Barbara's Status

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Update on Sunday (11/09/2014):

We saw Dr. Heger, and he changed Barbara from Cardizem to a form of Lopressor. Unfortunately, her ankle swelling is only slightly reduced. The ankles are still large and uncomfortable. Since she is no longer in atrial fibrillation, maybe we can quit the heart meds entirely.

Barbara had another ultrasound to check for fluid in the abdomen. Unfortunately, she does have fluid accumulating around the liver. So, we have rescheduled the ERCP procedure this week. We were hoping to avoid this invasive procedure, but to no avail. It is done as an outpatient, and takes an hour and a half, followed by an hour of recovery (she is fully sedated). We are apprehensive, but there doesn't seem to be any other course of action.

Update on Friday (11/14/2014):

Barbara had the ERCP procedure on Tuesday. The doctor found that the bile duct did indeed have a stricture near the area where the fluid was accumulating. He instilled a stent, which runs the entire length of the bile duct from the liver down to the bowel. Barbara was completely out for the procedure, and Michelle and I were invited into the recovery room as soon as Barbara woke. She quickly became more alert, and seemed in better spirits than before the procedure. In fact, she started complaining - and she had plenty to complain about. The doctor wanted her admitted so that he can watch for complications, the main one being pancreatitus, since the duct from the pancreas is disturbed during the operation. Although the ERCP was at Norris, she was to be admitted to Keck, since the draining procedure was scheduled for Wednesday morning at Keck. Well, it took hours for then to arrange a room at Keck, and arrange for an ambulance to take her a half mile to Keck. We had arrived at Norris at 8:30 am, and arrived in the room at Keck at 6:30 pm!

Barbara was restricted from taking anything by mouth for 8 hours before the ERCP. Then she was only allowed clear liquids, but with the confusion of the move, she got nothing. We finally begged some Jello, even though Barbara hates Jello. We knew that she would again be unable to ingest anything for 8 hours before the next procedure.

Since everything was getting screwed up, I decided to go to radiology and make sure that they knew that Barbara was admitted (the original plan was for her to be an out-patient). As I expected, they were completely unaware. The procedure went normally. It was a CAT SCAN guided draining of the remaining fluid which had leaked from the bile duct. The staff in the GI lab were outstanding - they took good care of Barbara, and even gave her some Morphine when the pain got bad.

Once the procedure was done, the doctors ordered Barbara discharged from the hospital. But, like everything else, this took a few hours while the nursing staff denied that the orders had been given. We actually had to call the doctor and get him to call in the orders that he had already given. We were very happy to get home and have Barbara relax in her hospital bed. We noticed that the swelling in her ankles is slightly reduced. She is still having to go easy with food. That's not surprising, given that she went without food for two days, and had a scope down her esophagus, through her stomach, and into her duodenum.

Today, we had a regular visit with Pain Management. Barbara is taking very little pain medication now, so the visit was perfunctory. Barbara's only pain is after eating.

Update on Sunday (11/30/2014):

Barbara has been making slow progress. Her ankle swelling is reduced, but not gone completely. Her main problem now is insomnia. She is taking Ambian, but it doesn't seem to work very well. It's hard to maintain a positive outlook when you are sleep deprived.

We see Dr. Heger (cardiologist) and get a PET scan this week.

We enjoyed a nice breakfast at Foxy's, our favorite. It's nice to have things returning to normal.

Update on Sunday (12/14/2014):

Barbara had a PET scan last week, and then met with Dr. Lenz. He said that the scan shows only inflammation areas from the surgery. The CA19-9 is down to 44.6, but that is still higher than a "normal" value.

Lenz is surprised at Barbara's difficult recovery from the surgery. If the cancer comes back, he will probably opt for SBRT instead of surgery. SBRT is a directed radiation which affects the tumor on which it is focused, with minimal damage to surrounding tissues. We'll see.

Barbara also saw Dr. Heger, our cardiologist. He says that her EKG looks fine, and he doesn't need to see her for three months. I'm sure glad that we stopped the talk about a pacemaker (by the hospital cardiologist, who seemed to want to "do something", even if it wasn't advisable).

Today we attended Kanan's gymnastic competition. He was up against gymnasts from numerous gyms in Southern California. Kanan was wonderful to watch - so string and smooth in his movements. At the awards ceremony, Kanan was on the stage 6 or 7 times - he placed in the top three of most of his events, and he received third overall for his age category. All of his hard training is paying off. He was glowing - and deserved it.

Barbara is still having trouble sleeping. Dr. Lenz suggested that she try Benedryl, a anti-allergy medicine which has sedative properties. It works sometimes. I've gotten used to Barbara falling asleep on my shoulder when we watch TV.

Update on Monday (1/12/2015):

Barbara saw Dr. Liebman, her hematologist, and he was happy with her labs except for her low iron level. Since low iron could be causing her tiredness, he ordered an infusion of iron. This was our first time in the day hospital since Barbara's last chemo, several years ago. The nurses are so caring and competent. How refreshing!

Barbara had her eyes tested for new glasses. The lenses in the eyes were replaced during the cataract surgeries. With her new glasses, she now has almost perfect vision. She is now seeing airplanes before I see them.

We celebrated Christmas at Michelle's. All of us were together, including Jessie, Kanan, Brent, Michelle, Sherri, Barbara, and me. Barbara cooked a chile relleno casserole, which was yummy. Michelle made two kinds of pancakes, some special sausage, and berries. We all exchanged gifts - one of our favorite is a calendar which Michelle produces which include photos highlighting the best of our 2014 family activities. We post it on our kitchen wall, and enjoy it all year long.

Barbara and I just returned from Catalina. We go every January to support the Avalon 50 Mile Benefit Run. I do the computer results, and Barbara helps keep things flowing at the finish line. Barbara was worried, with her bowel issues, but we made it over and back without any problems. The weather was dreary, raining all race day, and the runners all arrived covered with mud. Barbara got pains in her abdomen and had to retire to the room for a couple of hours, but was able to enjoy the rest of the activities, including the awards banquet Saturday evening.

Today we had a nice visit by Barbara's brother Bill, and his wife Vicki and her mother Barbara. They live in Connecticut, but Barbara has a vacation home in Montecito. We had a nice fish lunch together, along with Sherri. It was fun to catch up on all of the family news.

This week, Barbara has another ERCP procedure to remove the bile duct stent which was inserted two months ago after the surgery. She will be under full anesthesia. Every procedure worries us a little.

Update on Wednesday (1/28/2015):

Barbara has her ERCP. To our surprise, the doctor replaced the stent instead of removing it. He gave me a full report after the procedure. Barbara's liver has grown so fast that it curled the bile duct into a 270 degree loop, with a kink in the middle of the loop. The doctor was afraid that without a stent, the duct would clog at the kink. The new stent will keep the bile flowing for another two months. At that time we can reevaluate the situation.

Saturday, we attended another of Kanan's gymnastic competitions. Kanan is amazing! The combination of strength, agility, and concentration are a wonder to behold. There are so many different routines that he must perform, floor exercises with flips and balance, the rings which require incredible strength, the high bar, the pommel horse, and the parallel bars. Sunday, Michelle has us over for dinner, and we were able to express our amazement to Kanan.

Last updated on Wednesday, 1/28/2015 at 10:00 PM

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