We spent a stressful morning at Norris and Keck Hospital. Selby's office put our pre-op tests into the computer, and we were supposed to complete the tests at either Norris or Keck. We chose Norris, but soon found out that there were no tests in the computer. A call to Selby's office revealed that they know of "occasional" glitches where the Norris and Keck computers don't exchange information.
So, we went to Keck. They had the tests in their computer, but no "account" had been set up. The admitting office set up an account, but accidentally made it a one-day account for Feb 25. The error was overlooked by radiology, and Barbara had her chest X-ray. Next, at the cardiology department, they didn't like the account. One of their techs ran down to admitting and obtained a new account, and brought back the new account stickers. He gave us the unused stickers for the blood-draw lab. Unfortunately, we didn't apply one of the new stickers to Barbara's wrist band, and they noticed that the new sticker on the order form didn't match the wristband! After much "hand wringing", they went ahead with the blood test. This completes the pre-op stuff, but Barbara paid dearly in added stress.
The afternoon went much better. We met with Dr. Chang, the pulmonologist. She reviewed the scans and compared them with past scans. Most of the lung imperfections appear reduced, and the rest look calcified, which means that they will be there forever. She said that there is no reason for Barbara to take the lung meds anymore, or to schedule any more appointments. Barbara should only see her again if symptoms appear, like sputum or pneumonia symptoms.
The next two weeks look quiet, with no appointments scheduled. Then it's time for surgery!
Surgery is scheduled later this week. We are making final preparations. The hospital bed has been borrowed from Convalescent Aid Society. They also supplied a bedside commode, and a transfer bench to help Barbara get into the shower. Barbara bought an over-the-bed table on line, and I assembled it yesterday. We each have our worries: Barbara is most worried about the IV line that they will no doubt place into her neck. I worry about caring for her after she comes home. We both worry about the risks of the surgery itself, and whether we will have the same problems getting her adequate pain care. Luckily, we have Norris Pain Management on our sides, and I won't hesitate to call Pamela and Dr. Ryan to insure proper care.
I will attempt to post timely updates here as Barbara comes out of surgery and recuperates in the ICU and the surgical unit of the hospital.
Meanwhile, life goes on. Michelle is coming over with Kanan and our great granddaughter, Eva. She is Lexi's daughter (Lexi is Sandi's daughter). We've only seen Eva once, at a restaurant, and we hope that she feels comfortable with us. I'm sure that she will find the trampoline a fun experience, walking on the spongy surface.
Barbara is out of surgery. She is expected to be in recovery for 2 hours, and then we can see her in the ICU.
Dr. Selby explained that the surgery was much harder than he expected. Barbara's liver had grown since the last surgery, and it expanded into the area where the new tumor lies. The expanding liver dragged blood vessels along with it, and these vessels were dangerously near the tumor. Selby called in a radiologist to help map the mislocated vessels, and then he used a microscope to avoid damaging the arteries or veins. He had to advance very slowly and carefully, and the procedure lasted 4 1/2 hours. He also found that her colon had been pushed out of place by the liver, and part of the colon was up near her diaphragm. This is probably why she has had pain shortly after eating. Selby moved the colon back where it belongs. Ultrasound confirmed that there are no additional tumors.
Pain management is already actively involved. They plan to install an epidural catheter for pain medicine, but they must wait until tomorrow morning since Barbara didn't stop her Xarelto blood thinner until Tuesday evening. If we had known, she could have stopped it a day earlier. So, for the rest of today, the pain meds will be limited to the IV drip, which will keep Barbara drowsy. The epidural lets Barbara remain alert.
Looking forward to seeing her in a couple of hours.
Barbara says, "Tell them that I'm dancing in the streets."
She is indeed doing much better. When I first saw her after surgery (at 3 pm) she was in a lot of pain and the pain meds were making her confused. It was difficult to give her enough pain meds without increasing the disorientation. They increased the meds, at which point she fell asleep. Boyd, Yvonne, and I left at 6 pm, figuring that she would be asleep for the night.
It was not meant to be. I was awakened at midnight by a phone call from the nurse saying that Barbara wanted me and wanted her glasses. So, I came back to the hospital. Barbara was in better shape, with the pain under control. She was still pretty confused. Good things started happening quickly. They removed her IV line in her neck and the arterial line in her right hand. Then they took out the gastric tube which ran into her nose and down to her stomach. Next went the oxygen cannula. She felt much better with all of these tubes gone. Now she has only an IV in her left arm, the Foley catheter for urination, and a JP drain sucking fluid from the incision site.
The whole pain issue was solved this morning when they installed an epidural catheter, which infuses the pain medicine directly into the spinal column. This gives pain relief without dulling the brain.
At 3 pm, they moved her out of the ICU into a regular room. Finally, she is away from the infernal beeping machines.
At 4 pm we were visited by Dr Sher, one of Selby's associates. She said that Barbara is improving very quickly. She was impressed that Barbara was already out of ICU. Barbara commented that she had walked 5 miles on Tuesday before the surgery, and Dr Sher said, "Well, that explains your rapid improvement."
A few minutes later, Dr Lee came by. He had assisted in the surgery. He too is very pleased with Barbara's progress. He will come again tomorrow morning.
Michelle and Sherri have been doing yeoman duty. Michelle has been here frequently, allowing me to grab a little sleep. And Sherri has been at the house preparing easy food like smoothies for Barbara to enjoy after coming home.
Barbara is making dramatic improvement. Although she had some pain in her right shoulder this morning, it subsided. She has not complained about the pain since then. The epidural is great - she is no longer confused, and seems her normal self.
She insisted on walking, and I took her down the hallway and back. By the end of the day, she was doing laps around the floor. At one point, she passed gas. That is a big deal, because it now allows her to switch from a clear liquid diet to soft foods. She's been eagerly awaiting this change, since her last meal was Wednesday breakfast. She had a chicken sandwich for lunch. She is looking forward to her morning coffee (with cream).
Meanwhile, Michelle came by this afternoon. I went home to rest. The rain was coming down hard - five inches in the last two days. After two hours, I got up to return to the hospital. I noticed that the furnace was not operating. Looking into the basement I found two inches of water. Just great! So, I spent the next two hours pumping out the water and drying the floor. Miraculously, when I turned the power back on, the furnace operated properly - what a blessing!
Returning to the hospital, the room was empty. Barbara was out alone doing laps around the floor. They told her that it is 16 laps to the mile. I wonder how many miles she will log before they kick her out of here.
Barbara suffered a setback. At 11:45 pm last night her heart went into atrial fibrillation. After an XRAY and EKG, they started a big dose of Amiodarone, a standard antiarrhythmic drug. She had taken the drug once before when she experienced atrial fibrillation after her VATS surgery in 2010. But this time she had an allergic reaction. After administering only 35 mg of the planned 150 mg, she went into the shakes, much like the allergic reaction to the contrast dye used during cat scans. They cut off the Amiodarone, and gave her Benadryl to tame the allergic reaction. With the afib, her heart rate was very fast, up to the 170's. Next they gave her Cardizem, to lower the heart rate. I know from my afib experiences that if the rhythm can't be restored, they focus on lowering the heart rate.
She was moved from the surgical floor to the "step down" unit, where the care is more than a regular floor but less than the ICU. After two hours she began to return to normal, and the shakes stopped. But the atrial fibrillation is still present. After the VATS procedure, she was in afib for about 36 hours, and that was with the Amiodarone. So, we'll see what happens. They won't let her walk until the heart rate becomes more stable - it's fluctuating between 70 and 120 now. She's understandably disappointed at this development.
Barbara made steady improvement yesterday (Sunday). She took a walk and was feeling better until, at shift change time, the new nurse asked her to sit up. She pressed with her arm against the bed, and pulled at her surgery. The pain came on very strong. She asked for a bolus of the pain med, but the nurse had trouble finding the doctor's orders in the computer. The delay made Barbara's pain ever more intense. Finally, the orders were found and the extra med was infused into the epidermal catheter. After 15 minutes, Barbara was better. A little more training on the computer would help.
Sunday night we had a good night's sleep - good for a hospital - perhaps three hours of solid sleep. Today, Barbara had her epidural catheter removed. It needed to be taken out before she could have the urinary catheter removed. Also, she cannot start the blood thinner for her fibrillation until the epidural is out. With the epidural out, the regular pain meds need to be increased rapidly. The nurses weren't fast enough, and Barbara went into pain again. This time it took an hour before she began to feel relief.
In the afternoon, Sherri stayed with Barbara. Christina Gardner came by for a visit; her husband was Barbara's chemo buddy for several years. Then we had a special visit by Dr. Sher, one of Selby's fellow surgeons. She is delightfully entertaining, and we thoroughly enjoyed chatting with her for almost an hour. We originally met her after Barbara's 2006 surgery, but we never knew that she was so fun.
After another long walk, Barbara happily climbed into bed. She is watching TV, and dozing off.
This morning at 5am Barbara had to urinate. I was asleep, and she had the nurse help her. She had sweat during the night and her gown was wet. The nurse took the gown off, and then spent 15 minutes fussing around trying to figure out how to put the new gown on. Meanwhile, standing in the nude and damp, Barbara was getting thoroughly chilled. Back in bed she couldn't come out of the chill. She asked for a warm blanket, but they have no warm blankets on this floor. Eventually, the charge nurse arrived - he went to another floor and obtained a warm blanket. Finally she started to warm up.
Later in the morning a tech arrived to take an echo cardiogram. A cardiologist is on board to make a decision about the atrial fibrillation. They want to rule out any more serious cardiac problems. The echo cardiogram took over an hour, and it included pressing the probe on the surgical area, causing lots of pain. Luckily, Barbara has a pain pump, and was able to give herself doses of the pain medicine. Again, it took a while for the pain to subside.
The doctors are talking about letting Barbara go home tomorrow. The issues are the fibrillation and the pain medicine. The fibrillation is now under control to keep the rate down, and hopefully the heart will return to normal rhythm by itself. For the pain medicine, she must be off of all IVs, and transitioned to oral meds which she can continue at home. This evening, they removed the pain pump and started the long acting pain medicine. I hope that we don't go through pain battles as she switches to the oral meds.
De Selby came by and chatted for most of an hour. He is delightful. He gave more details about the surgery, and then he and Barbara chatted about children, bike riding, and anything else that came up. Leave it to Barbara to find the personal side of the doctor.
Barbara is home! They released her this afternoon after giving her one last dose of pain med. Upon arriving, she had a Moussaka dinner prepared by Sherri. What a joy to have good food again. We have a hospital bed, and Barbara is resting comfortable. We see Dr. Heger, our cardiologist, tomorrow morning to talk about the atrial fibrillation, which is still happening. We're about to launch into slumber land - minus the beeps from machines, the noise in the halls, and the incessant interruptions "to get vital signs."
Yesterday we saw Dr. Heger, our cardiologist. He is not overly concerned about Barbara's atrial fibrillation. He increased the dose of Xarelto to make sure that she doesn't form blood clots in the heart - clots are the primary danger from afib since they can travel to the brain and cause a stroke. His primary thrust is to control the heart rate, and he chose to switch her from a beta blocker to a calcium channel blocker. In a few weeks, if she is still fibrillating, he will consider cardioversion, the well known electrical shock to the chest. If it fails, then we will just accept the fibrillation, and keep her on the blood thinner. People lead normal lives with continuous fibrillation.
Michelle came over, letting me get a nice rest. She brought lots of food from Sharky's, and we are enjoying it - Barbara had some tortilla soup for a late morning snack. Michelle helped bathe Barbara. It was a delight after a week with only two bed baths in the hospital.
Barbara talked at length with Pamela in Pain Management. We now have a clear plan on the pain meds. Everything was confused in the discharge instructions from the hospital.
Our neighbor, Cara, has been extremely nice. Her child, Spencer (about 5), created a card with a rainbow drawing and his name in block letters. Cara is constantly passing gift packages over the fence. There is a wonderful bond between Cara and Barbara.
Barbara is curled up with her stuffed dog, a gift from Christina Gardner. The dog was a favorite of Christina's husband Bob; he had outfitted it with a specially made sweater saying "Cancer Sucks".
Barbara is doing well. She is able to get around the ground floor of our home - we're holding off on trying to get upstairs.
Michelle has been wonderful. She came by yesterday with food for both of us. Then today she did some grocery shopping and again brought us specialty sandwiches. She helped Barbara bathe yesterday, and they went on a walk today up to the corner.
Barbara's heart has been racing. We called the cardiologist, and he changed the cardiac meds, switching her back to the Lopressor instead of the Cardizem, which didn't seem to be doing the job.
We're getting back to normal. We played Sudoku both days, and she beat me both times - "and I wouldn't have it any other way!"
Barbara's heart rate is still too high some of the time. The Lopressor controls it for about 12 hours, and then the rate goes high. We called the cardiologist, and as we expected, he said to take the med twice a day. Hopefully, that will keep it under control. I find it surprising that she hasn't returned to regular sinus rhythm. It's different from my afib, which stops after several hours.
We took a walk to the corner - much farther than her last walk. She was in great spirits, noticing the colors in the trees contrasting with the sky. We have a nice walker with a seat, and she can stop and rest whenever she gets tired. The cardiologist thinks that her tiredness is either from the meds or from the rapid heart rate.
Michelle and Brent brought dinner last night, and we all ate together. Kanan and his friend Matthew were also here. It was a nice, relaxing family time together. Michelle has really come through in this time of need.
Barbara just walked around the block. Yesterday, she was able to climb upstairs to use her computer. So she is getting stronger.
The atrial fibrillation stopped Monday evening. She is now tapering off the cardiac drugs.
Sherri came by yesterday, and brought us dinner from one of our favorite Mexican restaurants, La Cabaņita. Barbara is in good spirits.
We saw Dr Sher today. She is another liver surgeon on Dr Selby's team. She was concerned about the pain in the incision area, and tentatively diagnosed it as rib pain from the retractors used during the surgery. But, to be safe, she sent Barbara for an ultrasound and determined that there was no problem like fluid buildup. It was a long day, waiting an hour for blood draw, 30 minutes for Dr. Sher, and 2 hours for the ultrasound. But we're relieved that Dr Sher was thorough.
We saw Dr. Heger, our cardiologist. Barbara had converted to normal sinus rhythm last week, but he did an in-depth analysis of the condition. He reviewed the echo cardiogram which was taken at the hospital. He said that both atria (upper chambers of the heart) are enlarged; the right atrium can be explained by the many months that Barbara had a Groschong catheter. But the left atrium is probably caused by back pressure in the blood flow. This may also leave her predisposed to atrial fibrillation. Since she has only had two episodes of afib, and both episodes were directly after major surgery, he felt that it is best to "watch and wait", rather than take an aggressive tack with antiarrhythmic drugs. I read to him his statement from 2010. "Let's let the Celestial Design Committee do their job."
Barbara is rapidly getting back to normal. She had been on the treadmill several times. She still has pain in her right abdomen. It could be from the surgery, when they used a retractor to pull her ribs out of the way. Or it could be adhesions forming already. Barbara had done a lot of research on adhesions, and she found that they form right away after almost all surgeries.
Today, Barbara is baking a lemon pound cake (from scratch, naturally) to take to Dr. Selby and his team tomorrow.
We've had a flurry of doctor appointments: Dr. Selby (surgeon), Dr. Liebmen (hematologist), Pain Management, and Dr Lenz. Everything is progressing normally, and the doctors are surprised at how fast Barbara is recovering. Her surgery looks like it was a long time ago (a good sign). Dr. Lenz discussed the possibility of chemo - he thinks that we should wait until we get the first PET scan next month. He also mentioned radiation, but that is best when all of the sites of tumors are next each other. Barbara's tumors were on both sides of the abdomen. Radiation also causes adhesions, and Barbara has had plenty of trouble with adhesions in the past.
We attended the 40th running of the JPL Arroyo Seco Freako, a wacky running race put on by the JPL running club. Being the 40th anniversary, all of the "old timers" were invited. It was fun seeing some of our running buddies from long ago. Barbara walked the 5K with Ed Rinderle, who was the president of the running club years ago. He and his wife helped keep Barbara from getting lost, and aided her through a stream crossing. Wonderful people.
We watched Kanan participate in a track meet. He ran the 800 yard run, the one-mile, and the 4-man relay. I've posted photos and movies here Beware: the movies are huge (12 MB to 27 MB).
Michelle's friends, Preetha and Sunil, brought Barbara a multi-course Indian dinner. Preetha is a gourmet cook, and she uses only the best ingredients, and she modified her recipes to make sure that the dishes weren't too spicy for Barbara. Barbara first heard of the couple a few years ago when their son died of cancer. Barbara sent them a Compassion book, especially written to help parents through the grief of losing a child. They wanted to do something caring for Barbara when they heard that she had yet another surgery. They are sensitive, caring people. Michelle has some very nice friends.
The last month has been a blur. Barbara has seen Dr. Sher (the surgeon), Dr. Liebman (hematologist), and Taline - Lenz is out of town. Taline reported that Barbara's newest PET scan looks good. The CA19-9 level is 39.4, which is almost down to the normal range. Taline was ready to pronounce Barbara cured, but Barbara is more cautious, especially given the frequent pain in her abdomen. The pain comes on suddenly and is sharp, like a bee sting, but incapacitating. Barbara has had to resume taking some pain meds that she was hoping to discontinue.
We celebrated my birthday and my brother's birthday at the Castaways Restaurant in Burbank. It sits on a hill where there is a commanding view of the entire LA basin. It was fun being with Boyd and Yvonne, and her daughter Robin, who was visiting from London.
We celebrated again with Michelle, Brent, Kanan, and Jessie in our back yard. Warm weather meant that swimming was in order, but I misjudged the heat and warmed the pool a little too much. It was more like a bathtub. Kanan grabbed a garden hose and he and his friend, Matthew, squirted each other with the cold water while basking in the pool. Barbara baked my favorite: chocolate cheesecake - scrumptious.
We combined Jessie's birthday with Mothers' Day last weekend. Another pool party, another enjoyable family get-together! Brent gave us a surprise by bring his 1954 truck, which he has personally restored by hand. It's a real beauty!
I've posted photos of these events here
We spent a wonderful weekend at the Great Western Bicycle Rally in Paso Robles. We camped in our motorhome on the county fairgrounds, and we were joined by Michelle, Brent, and Kanan in their motorhome. We enjoyed several rides, including Kanan's favorite: a trail ride through the woods surrounding the Salinas River. Kanan entered the Track Stand competition, which challenges each entrant to balance on their bike without putting a foot down or progressing out of a small box. Kanan had stiff competition in the form of an adult bike racer, who had his track bike. A track bike has no "coasting" feature - if you pedal backwards, the bike goes in reverse. Than makes it much easier to do a track stand, because you can back up to maintain your balance. Guess what! Kanan won! He beat the seasoned pro by a few seconds. At the "one minute mark" the riders were required to remove one hand from the handlebar, and the adult lost balance at that time. Kanan had only learned to do a track stand the day before, and he didn't learn about the "one hand" part several minutes before the competition. But he rose to the occasion. We were all jumping for joy - and so was the crowd that had assembled to cheer for Kanan.
Another surprise was to come at the awards assembly: Michelle, Brent, and Jessie (in absentia) each won raffle prizes, with Michelle winning the grand prize, a brand new bicycle. It was from a local bike shop, and she traded it in on a bike that she had been eyeing (photo here).
Sherri also has a new bike, and the four of us (Sherri, Michelle, Brent, and Booth) made a 30 mile ride on the San Gabriel River Trail. It may have been a little far for Sherri, but she hung in there like a trooper. Here we are pausing for a little rest.
We attended the Norris Festival of Life, a celebration honoring cancer survivors at Norris. It's a big pageant, outside under a tent with a band, speakers, and a magician. The magician picked Barbara and me for a trick, and we were brought up on stage. The trick involved bringing up 7 women from the audience, and repeatedly sorting them and eliminating the end women. Being a computer programmer whose job includes inventing test cases to try to break algorithms, I tried to foul him up. I did succeed in confusing him, but after I explained my move, he agreed that it was legal. Much to my surprise, the remaining woman was indeed Barbara! I was pretty impressed. I spent the next hour trying to figure out how I could have made it go wrong. Here is a photo of Barbara with our friend Juan, security guard at the Norris facility. And here we are with Traveler, the USC Trojan horse mascot and his owner.
Barbara has a new problem. A lymph node in her right neck is very swollen. We saw Taline, and she ordered an ultrasound. The report came back saying that it was suspicious. Dr. Lenz is not alarmed - ha says that metastatic cancer does not migrate up into the neck. Instead it comes down from the head. Nevertheless, he has ordered a biopsy which Barbara will have this week.
Barbara had a biopsy scheduled for the lymph mode in her neck, but as the day neared, the swelling subsided. So, it became a non-problem. We wish that all problems disappeared that easily.
Barbara is feeling well enough to have her hospital bed returned to the Convalescent Aid Society. They loan medical appliances for free. It's a wonderful service to patients in the area.
Barbara saw our cardiologist, Dr Heger. There are a few bumps in her EKG, but nothing to worry about. He and Dr. Liebman (our hematologist) agree that Barbara should remain on Xarelto, a blood thinner. Cancer patients are at risk for blood clots, and Barbara has already had clots.
We spent a delightful several days at Camp Whittle, a YMCA youth camp near Big Bear. Michelle is one of the counselors for the South Pasadena/San Marino YMCA camp, and I offered to bring my telescope and do nightly star viewing. The kids love it, and we love it. The kids have amazing questions, like the nature of black holes, the predicted collision of the Milky Way with the Andromeda galaxy, and where meteorites come from (we saw several). During the day, Barbara helps the camp staff and I take off on my mountain bike (to Butler Peak - fabulous). They feed us and provide a spot for our motorhome. I really enjoy eating with the kids, though you really need earplugs to avoid ear damage with the excited kids raising the decibel level.
This morning, Barbara had cataract surgery on her right eye. The left one will be treated in a couple of weeks. The cataracts (probably from the years of chemo) had started to interfere with her vision, especially at night. She has the eye patched until our follow-up visit tomorrow. I talked with several patients in the waiting room, and they are all happy with their new-found vision after the surgery. I can't wait for the patch to come off. A side benefit is that they measure her eye and instill a lens which is designed to give perfect vision. It's like getting Lasik along with the cataract elimination. She may be able to go without glasses for distant vision.
We have a pain management appointment later this week. Should be a routine visit.
We got some bad news from Dr. Lenz last week. The PET scan shows a tumor in the right lobe of her liver. It is 3.2cm by 2.4cm (a little over an inch). The radiologist looked back and realized that it appeared in a previous PET scan, but it was obscured by a surgical clip and a streak (of radiation) from the clip. So now, what to do. Lenz wants Barbara to first see Dr. Selby and see if he thinks that she is again operable. If not, then Lenz will refer Barbara to a radiation oncologist. There are new radiation treatments which may work on the tumor. Most Cholangiocarcinomas are not treatable by radiation since they are too widespread. But Barbara's tumors are always in the liver and are well localized. The technique is called Stereotatic Body Radiation Therapy (SBRT). It is very precise, minimizing damage to surrounding tissues. She would have 3 to 5 sessions.
Another option is to inject chemo directly into the liver, rather than intravenous injection which affects the entire body. The chemo is contained in "ferro spheres", tiny nano particles.
So, we have several appointments coming up. On top of that, Barbara is having cataract surgery on the other eye this week. The first eye turned out great. She is amazed at how good her vision is - but it's a little annoying that the two eyes are so drastically different right now. A few more days, and she should be seeing better than most of us.
We spent a fun three nights at Newport Dunes RV Park. Sherri is a manager there, and Michelle, Brent, and Kanan were parked next to our RV. We were celebrating Michelle's birthday, and we had a fabulous dinner at the "A Restaurant". Barbara took several walks around the park and the lagoon, in spite of having two bad pain episodes. We would have ascribed the pain to surgical scars and adhesions, but now that we know about the tumor, we realize that the pain may come from the tumor.
Meanwhile, Brent and I took a bike ride around the bike trails of Irvine (and got lost). Kanan and I spent some time together at the computer - he has decided to teach himself the Python computer programming language. I've never used Python, but most computer languages are similar, and I was able to help him get several programs running. He is very quick to grasp concepts. He will be taking a computer programming course in 10th grade this year - It's wonderful that it's offered at such an early age.
Barbara had cataract surgery on the other eye, and her vision is great! She got a black eye from this surgery, but it is fading.
We saw Dr. Selby on Friday. He spent considerable time showing us the scans, both recent and from long ago. He feels that this tumor came from microscopic cells left behind by the original surgery (at Kaiser). He stated that there is no reason not to be aggressive with this tumor. His only hesitation is the proximity to vessels. Unfortunately, Barbara's CAT scans and PET scans are done without contrast dye, since Barbara is allergic to the dye. The dye is needed to properly see the vessels. So, Selby is ordering an MRI, which is done with a different dye. If Selby is unable to operate, he suggests cyber knife. Of course, we have heard of other options from Dr. Lenz.
Selby also discussed Barbara's colon, which has been stretched to become abnormally long. This may be the cause of some of the pain that she feels after meals. As we found in the last surgery, the colon had been pushed out of place and wound up attached to the diaphragm. That's probably what lengthened it. Selby might shorten it while he has her opened up.
This week is the MRI, and we meet again with Selby after the results are available.
We met with Dr. Selby, and he decided that Barbara is indeed operable. He showed us the MRI and several PET scans going back to the era when Barbara could still tolerate contrast dye. He indicated where he planned to remove a section of the right lobe of the liver, while maintaining the vessels leading to the remaining liver tissues. He also plans to remove a short section of her colon. The colon is very long, and it wraps up next to the expanding liver. That is probably what is causing some of her pain after eating.
Selby's office will call us this week with the schedule. We expect to have the surgery in two or three weeks.
Barbara is out of surgery. It lasted 6 1/2 hours! Selby reports that he removed three tumors. He sent the sample to pathology, and they reported very slim margins, so he took another slice which was completely free of disease. They used ultrasound and saw no other tumors.
The colon had once again migrated up to the diaphragm. Selby put it back into the correct position, and then tacked it to the abdominal wall, in a procedure called Colopexy. He thinks that it will stay put this time.
The surgery took long since the scar tissue from the earlier surgeries had the liver sticking to the abdominal wall. They needed to be separated in order to access the liver.
Barbara is out of recovery and resting in hr room. Michelle and I saw her, and she looks vastly better than after her last surgery - thanks to the epidural. She is complaining about her inner arms hurting, but the doctors think the pain may be deferred from her rib cage, which was pulled up by retractors during the surgery.
We are all encouraged by her awareness. Things are looking up.
Barbara is recovering quickly. Yesterday she went for two walks around the floor. Today, she was seen by Physical Therapy, and taken for another walk. She feels considerable pain at the end of a walk, but a bolus (extra dose) of pain medicine in her epidural alleviates the pain. Today, however, we had a nurse who "goes by the book"; since pain management had only ordered for a bolus every hour, the nurse insisted on waiting another 15 minutes for the one hour mark, leaving Barbara writhing in pain for the duration. A few minutes later, the pain management doctor came by and was appalled at the nurse's action. She altered the orders to provide an extra bolus after any exercise, if Barbara wanted it.
Barbara's blood pressure has been low. The epidural can cause that, hence the caution about giving extra doses. Early in the morning, they gave Barbara a pint of blood to increase the blood pressure. It helped a little, but the exercise is what brought the blood pressure up into the normal range. As the physical therapist said, "Her body really likes the exercise." Little does he know!
Once the blood pressure is stabilized, they plan to move her from ICU to a regular floor. Then she will get rid of more tubes, which are hindering her movement. She has already lost the nasal tube (to empty the stomach), the arterial IV line in her neck, and one IV in her arm. She still has the epidural catheter, two IV's in her arms, a urinary catheter, a nasal cannula for oxygen, and the EKG leads on her chest. It's a plumbing nightmare to get up and walk.
The bottom line: she is improving ahead of schedule. She's already talking about going home.
Barbara suffered a temporary setback. Wednesday evening Dr. Selby thought that some of her pain may be from stomach cramps, disturbing the surgical site. He ordered Ativan, which is a psychotropic drug that calms the nerves. Barbara went into a stupor. Nobody drew the connection between the drug and her condition because around 9 PM she went into atrial fibrillation. Selby ordered her moved back into the ICU, but confusion reigned and one team thought that the other team was handling the move. Through all of this, Barbara was completely confused and hallucinating. When I came in at 7 am Thursday (yesterday) everybody was running without apparent direction. Finally, someone took charge and she was moved.
She remained "zoned out" most of the day. Thank goodness, a wonderful nurse named Melanie stopped the Ativan, since Barbara was unable to stay awake. Finally, late afternoon, Barbara started coming back to awareness. I later Googled "Ativan" and found that the side effects included sedation, drowsiness, mental confusion, memory impairment, and slurred speech - all of which Barbara was experiencing. Additionally, the effects are worse in older people, and patients who are taking narcotic analgesics.
Meanwhile, they were throwing drugs at her to calm the atrial fibrillation (Cardizem and Sotalol, a beta blocker). The cardiologist actually tried to order Amiodarone, even though that is on the top of her list of allergies. At one time the Sotalol stopped her heart for 8 seconds and it was discontinued. The cardiologist ordered an ultrasound of her legs to see if there were any clots - such clots can break loose and trigger afib.
Fortunately, Barbara came out of afib on her own. The heart medicines were stopped. But the ultrasound did indeed show clots in both of her legs. So, they started a Heparin IV to thin her blood. The clots would probably not have happened if she had been put back on Xarelto (blood thinner) earlier after the surgery.
All of this has delayed her release. Dr. Selby is comfortable with her going home and treating the clots with Lovenox, an injectable fast-acting blood thinner. His only concern is her heart and he is deferring to the cardiologists to address any remaining worries about the afib. I intend to point out to them that in each of her two past afib events, she converted back to regular sinus rhythm on her own, and never returned to afib (until the next surgery).
Meanwhile, being in ICU, it is hard to get them to walk her. Selby issued emphatic orders for her to walk, but she hasn't walked since Wednesday.
Barbara came home Saturday. What a relief! It took them 6 hours to do the paperwork and let her go. That delay resulted in their pharmacy being closed, preventing us from filling the prescription for Lovenox, the blood thinner. With clots in her legs and her lungs, the medicine is urgently needed. I took the prescription to Rite Aid, and they pointed out that it was dated 2013 instead of 2014. With some "class 2" drugs on the same script, they cannot accept any alteration, even from the doctor on the phone. So, I had to drive back to the hospital, find the doctor, and get her to write a new script.
I took the script back to Rite Aid, and when they tried to process it, Anthem Blue Cross rejected it saying that our insurance plan does not allow any Lovenox. To buy it without insurance would cost $4200.00. I came home empty handed. Luckily, we had some Lovenox left over from a year ago, and by adjusting for the different dose we could keep Barbara's blood thinned out until Monday, when Anthem offices are open and I could find out what is happening.
Today (Monday) I called Anthem and they assured me that Lovenox is covered. I went to our local pharmacy, and handed over the prescription. Yet another problem: the doctor's drug number is missing from the prescription. More phone calls, and more tries with the computer and the order finally went through. The pharmacy didn't have the drug, but would get it by this afternoon. Mid-afternoon the pharmacy called - their supplier had sent the wrong dosage. The correct dosage will (presumably) be at the pharmacy tomorrow morning. I'll believe it when I see it.
I tell this story as an example of how so many things went wrong this last week.
Barbara is enjoying being home. Sherri stayed with us and cooked three dishes which will keep us going for several days (moussaka, enchilada casserole, and frittata). She is a Godsend. Barbara walked around the back yard and felt good, but it was too warm and we cut it short.
She has been talking with Dr. Selby. He is concerned about the high volume of drainage coming out of her JP drain (a catheter that drains the internal surgical site. We will check with him tomorrow.
After Barbara's earlier surgeries, things settled down once she came home. In contrast, this time we are still in a cyclone of medical appointments, procedures, and phone calls.
I went back to Keck Hospital and obtained Barbara's medical records. We took these records to our cardiologist, Dr Heger. He studied her atrial fibrillation and the 6 seconds of missing heartbeat, and concluded that no action is necessary unless something new develops. Wouldn't you know it - later that day Barbara experienced an irregular heartbeat. We decided to just watch and wait, and it got better. We suspect that she may be prone to irregular heartbeats, especially when undergoing stress - and we've had plenty of that recently.
Barbara saw Amy, Dr. Selby's nurse practitioner. They are worried about the large amount of drainage being collected by Barbara's JP drain. Amy took a sample of the drainage to send to the lab. Too much bilirubin would be a sign that there is some leakage in the abdomen.
The next morning (Friday), Selby decided that Barbara should have an ultrasound of her abdomen to see if fluid is collecting. Keck was booked, and Selby made arrangements for the ultrasound at Hoag Medical Center in Newport Beach, over an hour's drive from us. Selby is on the staff at Hoag, as well as Keck. We drove to Hoag and had the ultrasound. The radiology doctor came into the procedure room and did additional looking into Barbara's abdomen. He was alarmed due to a pool of fluid. He tried to reach Selby, but was unable. So he decided to admit Barbara to Hoag Hospital. This was totally unexpected. Now she would be kept miles from our home. How would I help her? We decided to refuse, and return home. On the way home we reached Selby. He worried that the fluid might get infected, and sent us to the pharmacy for an antibiotic.
Today we took a timeout from the medical cares. We attended the Relay For Life in Glendale (sponsored by the American Cancer Society). We did the survivor's lap and chatted with several other cancer survivors. Barbara was happy to be able to participate for the sixth or seventh time. Everyone was upbeat.
Barbara started having diarrhea, probably because of the antibiotic. Dr. Selby had her stop the antibiotic, but he is still worried about the fluid puddle in her abdomen. He has ordered an ERCP (Endoscopic retrograde cholangiopancreatography) procedure later this week. It involves sedating her and sending a probe down her esophagus, through her stomach, and into her duodenum. Then a radiocontrast is squirted up the bile ducts. Fluoroscopy is used to look for leaks or blockages in the ducts.
This is a fairly invasive procedure and we are both concerned. We also questioning the doctor about whether the procedure can be done when Barbara is allergic to contrast dye. We will see what develops.
Barbara had another ultrasound of her abdomen on Thursday. The fluid is still pooling near the surgical site of the liver. The surgeon, Dr. Cheng, inserted a catheter between her ribs and drained 200 cc of fluid. The procedure was not too painful until he drained the fluid. The catheter has a pigtail coil which holds the catheter in place in the sack of fluid. When the fluid is drained, the sack collapses onto the pigtail, and the catheter irritates the tissues. Barbara needed Morphine to lessen the pain. They left the catheter in place to see how much fluid comes out in the next few days. Presumably, if the flow lessens, we might not need the ERCP procedure. Additionally, she will have another ultrasound tomorrow to see if the fluid is indeed gone.
Last Friday, and again today, we saw Dr. Heger. Both times he ran an EKG to look at her irregular heartbeat. She is back in atrial fibrillation. On Friday, her heart rate was around 170 - way too fast. He prescribed two drugs to slow the rate. This morning the rate was down to 120 - better, but still too high. The 170 beat rate would have prevented her from receiving sedation for the ERCP. The 120 rate is more acceptable.
Today is a "red letter day. Barbara had an ultrasound, and the fluid in her abdomen is almost gone. We met with Amy, Selby's nurse practitioner, and she made our three dreams come true: the ERCP procedure is cancelled, the JP drain is coming out, and the pigtail drain is also coming out. Removing the pigtail drain was very painful, as the pigtail part scrapes past the ribs when it is withdrawn. The JP was almost painless.
We are ecstatic. Now Barbara can look forward to improvement unhindered by these torture devices. The only remaining problem is the atrial fibrillation which robs her of energy. One of the heart drugs, Digoxin, has the side effect of ankle swelling, and Barbara's ankles are quite large. We see Dr. Heger next week - perhaps a different medicine will work as well.
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.
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.
Last updated on Friday, 11/14/2014 at 9:00 PM
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