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.

Update on Thursday (3/12/2015):

After a long quiet spell, things are happening again. And they're not good things. On Monday, Barbara was informed by Dr. Lenz that the PET scan last week showed two tumors. One tumor had been seen in the PET scan just after the last surgery, but it was thought to be an artifact from the surgery. Now it's clearly growing - from 1.6 cm to 2.7 cm. The other tumor is nearby on the surface of the liver. Her CA19-9 has also gone up to 62. Dr. Lenz is worried that Selby will not want to operate again so soon after the last surgery. We see Selby next week to see what he thinks.

Lenz has another idea. There is a new radiation treatment called Stereo tactic Body Radiation Therapy (SBRT), which is a highly directed radiation. Supposedly, it minimizes collateral damage by focusing cross beams on the tumor - the surrounding tissue only sees one of the multiple beams. We are scheduled to see Dr. Song at Norris, who specializes in SBRT. We'll see what she says.

Yesterday, Barbara had her bile duct stent removed. The preparation took much longer than the procedure, which lasted only 30 minutes. Dr. Buxbaum warns us to look for signs of bile buildup: yellowing of skin and eyes, itching and redness. If any of those effects show up, he may need to reinstall a stent, possibly permanently.

Barbara is still fighting bowel issues. It occurred to us that her pain meds (in the past) are known to cause constipation. It stands to reason, that with her taking no pain meds, she might have the opposite reaction. It's one thing to figure out a reason - it's another issue to deal with the problem, which is keeping Barbara from going on the long walks that she loves.

Update on Wednesday (3/18/2015):

Barbara saw Dr. Song, and she said that Barbara is indeed a good candidate for SBRT radiation. But she commented that surgery is the favorable choice for a better chance of eliminating the malignancy, if Selby will do the surgery.

On Monday, we saw Dr. Selby. after analyzing many past PET/CT scans (the computer works great for him), he agreed to do the surgery. He always seems to want to do ablation, but the main tumor is too close to a bile duct, and ablation is not precise enough. The main tumor is not too deep, but he will need to avoid the bile duct. The second tumor is on the surface of the liver, or possibly not part of the liver at all. He will see when he goes in. The surgery is to be scheduled in a week or two.

Meanwhile, with her history of Atrial Fibrillation, Barbara needs a clearance from our cardiologist for the surgery. Unfortunately, he is retiring to do oil painting full time. We're happy for him, but it is a loss for us. He gave Barbara the OK for surgery, and felt that nothing would be learned from a stress test. The anesthesia folk still want a stress test, so we'll see how that works out.

We celebrated Barbara's birthday at Michelle and Brent's mountain chalet in Wrightwood. Michelle cooked up a huge brunch, and we all enjoyed the feast. Sherri and Kanan joined in for the festivities. It was a delightful getaway.

Update on Tuesday (4/07/2015):

Barbara just completed her sixth cancer surgery. It lasted about four hours. Dr. Selby just reported to us (Michelle and me) that the surgery went well, even though it is always difficult to cut through the scar tissue from the previous surgeries. He removed two tumors, one of which was resting on a vein inside the liver. He couldn't cut as wide a margin around that tumor, so he is recommending some radiation to destroy any remaining cancer cells. He left a pellet to mark the area where radiation is needed.

Barbara is in the recovery room, and we haven't seen her yet. She will be in the ICU for a day or two, and then three or four days in a regular hospital room before going home.

Update on Saturday (4/11/2015):

Barbara is recovering quickly. Even Dr. Selby is surprised. Barbara has been switched from an ice-only diet to a regular diet, and she is enjoying eating a little bit. She can't eat very much without causing pains in her abdomen. They are phasing her over from IV medications to oral meds, in preparation for going home, possibly tomorrow (Sunday). At last she will get some uninterrupted sleep.

There was a big fiasco just before the surgery: apparently the doctor's office didn't realize that we had changed insurance on Jan 1 (even though they had already billed our new insurance for several office visits). So, the afternoon before the surgery we got word that no one had told the insurance about the surgery. It was so late that the insurance doctors had gone home for the day. The surgery was in danger of being cancelled if the insurance approval couldn't be rushed through early Tuesday morning. Luckily, the insurance approval came through at 7:30 am, and we left home at 8:00 am for the hospital. Talk about stress!

Update on Saturday (4/18/2015):

Barbara has been home from the hospital a few days now. She is improving rapidly. Her only issue is pain after eating, which can be quite severe. She is also being poked by the staples used to close her incision. Luckily, those staples will come out Monday, when she sees Dr. Selby. She also has a drain, which may come out.

Sherri cooked a number of meals for us, most of which were frozen for our later enjoyment. She is a wonderful cook, and we are delighted with the fruits of her labor.

Barbara is not yet up to driving. I took her to breakfast at out favorite place, Foxy's. Tonight we enjoyed a Mexican meal with my brother Boyd and his wife Yvonne. Barbara doesn't eat very much, being afraid of the resulting pain, but she still enjoys what she can eat.

Barbara and I have gone on several short walks around the neighborhood. She's not yet ready for her 5 mile walks, but we walked about a mile this morning - only a week and a half after surgery!

Update on Friday (5/01/2015):

We saw Dr. Lenz a week ago. He was very excited to report that the genetic testing has registered a "hit". We had paid extra to have tissue samples from Barbara's last two surgeries sent to a firm that does genetic testing, looking for known tumor markers. They found a known (bad) gene, and it is the subject of a clinical trial of a gene specific drug. To join the trial, Barbara must prove that she has the disease in her body. Since the surgery removed all of the tumor possible, she must undergo another CAT scan, looking for remaining disease. The CAT scan will be in three weeks, to let the artifacts from the surgery settle down. This will be the first CAT scan where we are hoping for a positive result (Ironic, huh). If no disease is visible, then the clinical trial is out, and we fall back on the original plan for radiation.

At an appointment with Dr. Selby last Monday, Barbara's surgical area was red, swollen, and tender. They worried about infection, she was prescribed the antibiotic Amoxicillin (Barbara reacted to it with repeated diarrhea, but that's another story). The swelling might be caused by a fluid buildup, and Barbara was sent immediately to ETC at Keck for an ultrasound and drainage of the fluid.. ETC (Evaluation and Treatment Clinic) is like an urgent care facility. Unfortunately, there is nothing "urgent" about ETC. We were kept in a holding cell - oops, I mean tiny treatment room - for five hours until an ultrasound could be conducted. After the ultrasound, we received no information for another couple of hours, until a nurse started preparing Barbara for admission to the hospital. We asked what was going on, and the nurse responded that she is not authorized to tell us anything. We demanded to see someone who "is authorized". Finally, a doctor arrived, but didn't tell us anything. He said that we cannot see the ultrasound results because the radiation department is now closed. Somewhere in the next 20 minutes, he discovered that Barbara is on Xarelto, a blood thinner. [Why is it that we have to enumerate Barbara's entire list of medicines to everyone who comes into the room, and then the person who really needs that information doesn't know about it?] The doctor said that Barbara must wait 72 hours for the Xarelto to leave her system, before the fluid could be drained. Barbara argued that Dr. Liebman, her hematologist, had tested Barbara and determined that all traces of Xarelto were gone from her system after 36 hours. And what's with this "admission"? Were they really going to have Barbara sit and rot in the hospital waiting for the 72 hours to expire before she would be treated? We later learned from Selby that the ultrasound showed NO fluid; so, again, what's the purpose of admitting Barbara? We refused the admission, and they sent us home with the admonition to call Selby the next day.

One more thing: the nurse at ETC had removed Barbara's dressing. Therefore, she needed to repack the wound. She clearly didn't know what to do, and she asked me to explain how I repacked the wound!

Selby was still worried about fluid buildup, even though the ultrasound showed no fluid. So, a CAT scan was scheduled for Wednesday (two days after the ultrasound). We arrived at Keck at 8:30 am for a 9:00 am CAT scan. After going through Admitting, we were sent to Surgical Pre-Op. It seemed weird to be in surgery when we were destined for radiology. Well, somewhere there was a screw-up. Radiology couldn't find us and considered us a no-show. Meanwhile, in Pre-Op we are undergoing a full surgical prep - and we were asking, "What's going on?" Our nurse kept calling radiology to ask and they responded that they were not ready for us. Finally, at noon, radiology response changed: now they stated that had no idea what procedure Barbara was supposed to receive. At this point we called Amy, Dr. Selby's nurse practitioner. She was livid. She called the hospital, and things started to happen. Finally, around 12:30, Barbara was rolled downstairs to CAT scan. The bottom line is that the CAT scan showed no fluid, so no drainage was needed. The swelling is apparently a combination of inflammation and extra intracellular fluid. We finally left, after six excruciating hours.

Just before leaving, we were visited by two representatives of patient care at Keck. They had received Amy's complaints, and interviewed us for all of the details. They truly seemed to care, and planned to get to the bottom of the screw-up. They insisted that we call them directly if we have any problems in the future.

We see Selby again on Monday. Hopefully it will be a routine post-surgical check.

Update on Saturday (5/23/2015):

Barbara has had a bunch of doctor visits and several procedures. Dr. Selby had left a tiny "T-tube" in Barbara's abdomen to drain bile. It's well known that leaving a catheter for a long time is inviting infection. Well, Barbara got an infection. Selby removed the tube and started her on an antibiotic. As with most antibiotics, a common side effect is diarrhea, and Barbara got it with a vengeance. After trying two other medicines, Barbara is finally taking Clindomyacin and is tolerating it better. We worry about some serious side effects which are rare, but very dangerous.

Barbara had just finished the antibiotic, when her pain level seemed to be increasing. Selby's nurse practitioner, Amy, sent Barbara for an emergency cat scan. It showed some inflammation near the surgical area, and also in her lungs. So, they put her back on the antibiotic, and recommended that she schedule a visit with Dr. Chang, the pulmonologist who treated Barbara a year ago.

We are still trying to get the PET scan to see if Barbara can be accepted into the clinical trial for the medicine based on Barbara's gene analysis. Now, with this new infection, the PET scan must be delayed again.

Barbara is having trouble keeping her spirits up. We are constantly in doctor's offices or the hospital for procedures. It's exhausting. We had to cancel going to the bicycle rally which we've attended for many years. The big worry is that while we're fighting these incidental battles we may be losing the war: Barbara is not on chemo or radiation to destroy any cancer cells left after the surgery.

Update on Monday (6/08/2015):

Barbara is back in the hospital. Hopefully, it is only for one night. Last Friday, she had an ultrasound guided probe of the swollen area around the site of the removed drain. Over the weekend, the lab cultured the material acquired by the probe, and it was found to be a nasty bacteria. The antibiotic of choice for this bacteria is Vancomyacin, and it needs to be administered via a PICC line, a catheter entering the upper arm and threading around to near the heart. She was admitted to the hospital, where they are giving her other antibiotics, and watching her until they install the pick line tomorrow.

The area around the removed drain is swollen, red, and painful. If she jiggles the area, like when she gets up from sitting or trips on a step, the pain is intense, radiating up from her abdomen to her shoulder.

Hopefully, the antibiotics will cut the infection, and she can come home tomorrow.

Update on Thursday (6/11/2015):

Barbara is back home. The one-day hospital stay became two days, since the team that installs the PICC line was busy. There was also a delay arranging for home health care - an RN needs to administer the infusion pump. Actually, the RN is teaching me how to run the pump, and she will monitor me for another day or two. After that, she will only come here once a week to change the dressing. The pump is definitely an annoyance. We hook it up to Barbara at 10 pm, and it automatically gives 3 doses, at 10 pm, 6 am, and 2 pm. Then Barbara is free of the pump for 8 hours to run errands, take a shower, etc. This regime will last several weeks.

Meanwhile, Barbara received a call from her pulmonologist, Dr. Chang. A nodule in Barbara's lung is growing. They are scheduling a biopsy next week to determine is the nodule is a metastasis from the cancer. We need to find our quickly, so that Barbara can start the genetic treatment or start chemo. This development could be dangerous.

Update on Thursday (6/25/2015):

Dr. Selby removed Barbara's drain. This is the catheter which was draining the infectious stuff from near her surgery site. Not much was coming out, and the drain and bag were annoying, both in the shower and on the toilet. The removal was painful - it was a foot and a half long.

The infusion pump is becoming routine. After the morning infusion, I remove the pump and tube, leaving Barbara free of the equipment for six or seven hours. She can shower and run errands without the nuisance of the pump. Then, before the scheduled afternoon infusion, I hook up a fresh bag and tubing. When we first started this ritual, the home health nurse "taught" me how to prime the tubing and connect it to Barbara. But I had already read the pamphlet, and I caught the nurse making mistakes. Upon questioning, she admitted that she had never primed the line by the gravity method. Needless to say, we arranged for her replacement with a more competent nurse.

The lung biopsy has been cancelled. Dr. Chang called in another specialist to review the scans, and they agreed that the spot in the lung did not look like metastasis. Good News!

Our daughters, Michelle and Sherri, threw a wonderful Fathers' Day party for me and Brent. It was in our back yard, and the pool offered a refreshing cool-off from the heat. The meal included a wide assortment of items from a place called Stone Fired Grill. And they didn't skimp on desserts: brownies, cheesecake, and the second best carrot cake that I've ever had (Barbara's is the all-time best). Later in the afternoon, Kanan's cousins Dillon and Lindsay and their dad Matt came over to add to the fun. It was a very enjoyable afternoon.

Next week, Barbara has an appointment with her cardiologist, and a PET scan. It will be interesting to see what shows on the PET scan. Maybe we can get started on the gene therapy that Dr. Lenz has found.

Last updated on Thursday, 6/25/2015 at 6:00 PM

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