Barbara saw Dr. Hagen, the thoracic surgeon. She was referred to him because of the PET scan showing spots in her lungs. He had studied the current and past PET scans. Unlike Lenz and the Norris radiologists, Hagen was not ready to assume that the spots were just inflammation. Some of the spots would wax and wane over the scans, and he felt that they deserved to be watched, but not biopsied. One new spot has appeared at the right edge of the right lung, and he felt that it would be appropriate for a VATS procedure. The VATS procedure involves going into the area with laparoscopic instruments through small incisions in the chest wall. The tumor is surrounded with a sack to catch any spillage - important to prevent "seeding" (spreading) of the cells if it turns out to be malignant. Then instruments are used to cut out the tumor and remove it. Pathology will determine if it is malignant. Barbara agreed to the procedure, which will entail four or five days in the hospital. We will probably schedule it in early January.
In preparation for the surgery, Dr. Hagen ordered a pulmonary function test to determine the health of her lungs. Barbara completed the test this morning and reports that it was extensive, and required lots of energy, with rapid breathing, deep exhaling, etc. She also had an arterial blood test (it hurts) to measure the oxygen saturation in her blood.
I've been tutoring Jessie for her advanced algebra class. It's fun for me, and I can see that she understands the techniques better. She also wanted me to help with her chemistry class, but I found out that they are covering organic chemistry, and I have only studied inorganic chemistry. It would be like the blind leading the blind.
After two weeks filled with medical tests and appointments, next week will be a relief, with nothing medical scheduled. We plan to visit Curtis and Lena and attend a concert where Lena is singing. We also plan to visit Michelle and Brent when they are camped at the beach.
This weekend we drove the motorhome to Escondido to visit Curtis and Lena and their son Antonio. Sherri drove down separately and stayed with us in our motorhome. We had lots of fun conversations, punctuated by amusement as their dog Bailey ran into things; Bailey just had eye surgery and is fitted with a cone collar to prevent her scratching the eye. She hasn't yet learned how to maneuver the device, and she continually runs into people, walls, and furniture. I spent some time with Antonio, helping him read his ABC book, talking about science (his favorite subject in school), and using his computer. He is only six, but he is reading quite well.
The highlights of the weekend were two musical events. The first, on Saturday evening, was a singing and instrumental Christmas extravaganza, organized by Lena herself. There were 10 or 12 acts, with the first half (before the intermission) devoted to Christmas melodies from history, especially from foreign countries. The second half was lighter, with delightful patter songs and rounds. The singing was superb, and the timing of the rounds was perfect, making for an enjoyable experience. Lena was clearly the standout - her voice is captivating and fills the room with warmth. I especially enjoyed hearing her warm up before she left home for the performance.
Sunday we had a nice lunch at their favorite restaurant, which is part of a brewery, and has Vegan and no-gluten meals on their menu. Here we are in the gardens outside the restaurant.
Sunday afternoon we attended the second concert, which exclusively featured her group, Sisters in Treble. We heard some of the same music, which was a delight for me because I knew what to watch for. Some of the other tunes were new to us.
Both of the concerts were in churches that Curtis and Lena attend. The people in attendance were very friendly. Just before the start of the second concert, Barbara has a pain attack. The members were very helpful in arranging an electrical cord for Barbara's heating pad. After the productions, we had some great conversations: I found a lady who had flown extensively in Baja, Mexico (as have I). We also had a nice conversation with a couple who have traveled to Alaska in their Lazy Daze motorhome like ours.
We topped off the weekend with a visit to the Claim Jumper Restaurant, which we love. We were exhausted, but happy, as we returned home.
Because of her MRI showed an enlarged atrial chamber, Barbara had an echocardiogram last week. The result was apparently abnormal, because they instructed Barbara to see a cardiologist. But, of course, they won't tell Barbara what is wrong. We are scheduled to see my cardiologist, Dr. Heger, next Monday. We had already scheduled the VATS surgery for Thursday. We don't know if the problem with her heart will delay the surgery. Barbara tried to call the surgeon, Dr. Hagen, but his whole office is on vacation, so we will have to straighten out everything on Monday, once we know the seriousness of the heart problem.
We spent Christmas at South Carlsbad State Beach, camped next to Michelle and Brent. Here they are gathered round the Christmas tree (inside their motorhome). Barbara got special holiday hugs from Brent and Michelle. Sherri drove down and joined us for two nights. Barbara made her signature dish, Bastilla, being sliced by Michelle and served by Sherri and we all enjoyed the Lakers game on satellite TV while partaking of the delicious meal. Now THIS is camping at its best!
Barbara and I stayed an extra night at the beach to unwind. Unfortunately, Barbara endured more pain attacks. She needs her electric heating pads to lessen the pain, so we ran the generator a lot. The campground does not allow generators to be run after 8 pm, so I rigged up two inverters to keep her heating pads going.
The trip home was especially tough on Barbara. The stop-and-go traffic and the bumpy freeways combined to aggravate her pain. By the time that we arrived home, she felt so ill that she remained in the motorhome for an hour while I unpacked our stuff.
Barbara has been having trouble with incontinence. Sometimes she must wear diapers. She used up her supply, and I gave her some of mine, which I needed after my prostate surgery. This is not the kind of sharing that I ever expected.
For the last few days, Barbara has been in a fight with our insurance over her pain medicines. They were paying for the meds in the past, but some new "bean counter" has just decided that she is taking too much. How is it that the insurance company can make medical decisions? Shouldn't that be the province of a medical doctor?
She is also having difficulty with the psychiatrist who treated Jaedon. His billing staff keeps sending new bills, even though we haven't had an appointment in months. Maybe they think that they can bluff us into paying for something that we have not received.
In spite of the difficulties, including a couple of dead rats in the basement, the holidays were enjoyable. Barbara especially loves the Sudoku game which Steve and Irma left on our doorstep. And my favorite was a greeting card from Katie, the four-year-old girl up the street. She had just learned to print and she wanted to send a card, just like her parents do. Her dad asked whom she wanted to surprise, and she responded, "Booth, down the street." Warms the heart.
On Monday, Barbara saw our cardiologist, Dr. Heger. The only issue is the enlarged right atrial chamber, which was confirmed by the echocardiogram. He ruled out some of the causes, like lung failure, blood clots, and a bad tricuspid valve - it looks fine in the echocardiogram. He recommends a transesophageal echocardiogram, where the probe is placed down the esophagus to be closer to the heart. It's not as bad as it sounds - I had one before my first ablation. Ideally, the procedure could be done at the start of Barbara's VATS surgery, and we hope that it can be coordinated between doctors on such short notice. He feels that it is safe, cardiac-wise, to go ahead with the surgery.
Barbara is now scheduled for the VATS surgery. Today we went to the hospital for the pre-op procedures, consisting of blood and urine tests, a chest X-ray, and a consultation with much signing of authorizations. The last step was to be a talk with a resident. We waited an hour and a half for the resident, and then gave up waiting and told the receptionist that we couldn't wait any longer. Clearly, this had happened before, as she didn't seem at all surprised. I suspect that we'll hear about this later. Barbara is quite nervous. Being in the hospital is very unsettling, with others in control of your world. She is especially worried that they will fail to provide her normal pain medicines, which would cause her to go into withdrawal. The nurse at the pre-op recommended that I have Barbara's regular pain medicine with me in case of any difficulty getting it from the hospital.
I will post here as soon as I can after Barbara comes out of surgery.
On a lighter note, our new upstairs shower was draining slowly. So the less-than-master plumber (me) put a plumbing snake down the drain. To my horror, the snake got stuck 15 feet down the drain. So, Tuesday the "real" plumber arrived. He couldn't get it unstuck, and, with my consent, pounded holes in the kitchen ceiling and the wall outside the kitchen. He cut open the pipe, revealing my snake. It had maneuvered around the shower trap, four right angle bends, and one 45 degree bend and got stuck in a dry hair ball. With so many turns and such a distance, the snake just curled up on itself when we tried to rotate it. But when we were within two feet of the stoppage (and no bends), he was able to free it up. He replaced the old corroded galvanized pipe, and included a cleanout opening so that I can clean out the restriction in the future (from three feet away instead of fifteen feet). Now we're looking for someone to do some plastering and some stucco repair. It's always something.
Barbara had her VATS surgery on Thursday. It lasted about two hours. The surgeon reports that he removed a mass about 3 inches by 2 inches. It did not look like a tumor. It looks more like inflammation or micro bacteria. Unfortunately, when a patient has such stuff in the lung, the Health Code requires that they be isolated for suspicion of Tuberculosis. It doesn't matter if the spots have been seen in the cat scans for years, or the patient has none of the other Tuberculosis symptoms. Barbara must produce sputum samples for the next three days to prove that she doesn't have the disease. The surgeon is confident that Barbara does not have Tuberculosis.
When I was finally allowed to see Barbara, she was in bad pain. I asked the nurse and she responded that Barbara had received one shot of Morphine. I insisted that Barbara is accustomed to much more pain medicine, even when she is not recovering from surgery. To give her less now would be criminal. It turns out that the surgeon was dictating the low level of pain medicine. His philosophy is that patients shouldn't need much pain medicine. He actually said that most VATS patients get by with some Tylenol with Codeine. We find that hard to believe.
Barbara had a horrible first night. The pain was unrelenting; she describes it as worse than childbirth. And it lasted all night. Neither of us got any sleep as we tried to deal with the problem.
Friday morning I called Pamela in Pain Management. She started the ball rolling. Dr Nemat talked directly with Dr Hagen, pointing out that he (Nemat) had been treating Barbara for years and was in the best position to determine her pain medicine needs. Nemat apparently prevailed, and the Pain Management team at the hospital arrived in our room. They were aghast the Barbara had been receiving far less pain medications than she was routinely taking at home. They immediately restored Barbara's dosage to her normal level plus a pain pump with Dilaudid for breakthrough pain. Finally, Barbara's pain was reduced. She still had pain, but it is better controlled. Her blood pressure dropped from 145/90 to 117/70. She began to dose off.
Last night Michelle took over so that I could get some sleep. Barbara had a much better night. She was still awakened many times for all of the usual hospital annoyances, but she is feeling much better this morning, and she is finally able to eat some food. She is getting up and walking occasionally, although she can't walk outside the room due to the isolation rules. They turned off the suction on her chest tube this morning in preparation for removing the tube tomorrow or the next day. When the tube comes out, she can go home.
Barbara's friend Catherine came by for a visit. Since she is in nursing school (after receiving her PhD), she is comfortable with the isolation rules, including the mask and gown that we must wear. The girls had a great "Kuchen Klatsch", and Barbara's spirits were lifted.
Barbara is resisting giving the sputum sample since it requires deep coughing, which is especially painful. The surgeon tells us that he can release her without the sputum samples, but the Health Dept will be coming after us. Barbara says, "Let them come. We'll deal with that when it happens."
Sherri arrived at the hospital yesterday evening to take over. I came home to get some sleep. Barbara was doing a lot better with the normal pain medication routine, and Sherri left before midnight. At 2:30 am, I received a distressed phone call from Barbara. Her heart was racing, and she was frightened. I pulled on some clothes and rushed to the hospital. The doctors were already working on her. They had done an EKG, revealing that she was having atrial fibrillation. Her pulse rate was up to 160. Having been through all of this with my fibrillation, I know the drill, and I was happy to see that they handled it by the book. First, they bring down the pulse rate with a calcium channel blocker (Cardizem) and a beta-blocker. Then they watch the rhythm to verify that the ventricle is not involved. Unfortunately, for one 4-second period during the late morning, she had either supra-ventricular tachycardia (which is not life threatening), or ventricular tachycardia (which is more dangerous). They couldn't tell from the short episode, which was recorded on the normal room telemetry. They now want to hold her is the hospital at least another day to see what the heart does. The best outcome would be for her heart to convert back to normal sinus rhythm on its own. The worst would be for her to have more ventricular events. The surgeons informed us that afib is not unusual after this type of surgery: around 20 percent of the patients experience it. Apparently, all of the disturbance of the lung annoys the nearby heart.
In the afternoon, Barbara's chest tube was removed. Barbara felt only a brief bit of pain as it was withdrawn. Originally, removal of the tube would have allowed her to go home, but now they want to watch the fibrillating heart.
The surgeons got the preliminary report from the pathologist: the sample does not look like cancer, and it does not look like tuberculosis. We're not sure about the Health Dept. rules, but this result may allow Barbara to be removed from isolation. Then she could walk the hallways and get her strength back, and prevent blood clots in her legs.
Junie and Esther came by for a visit. The girls had a fun time together. I noticed that Barbara seemed to forget about the pain while engrossed in the conversations.
Conrad also paid Barbara a visit. As usual, they had to put up with all sorts of interruptions - X-ray, blood draws, and a bed bath which we were able to reschedule. It was such a pleasant surprise to see Conrad.
We're hoping for her release tomorrow.
At 11 pm, I received a call from Barbara's nurse that Barbara was being moved to the Intensive Care Unit, to monitor her heart better. She will still be in isolation.
When I arrived in the morning, Barbara was still in atrial fibrillation. The doctors told us that they want to restore normal rhythm, and then watch her for at least a day longer. Seems like overkill to us - maybe they're after the insurance money. Since the Cardizem and the beta-blocker were not fixing the arrhythmia, they switched to Amiodarone. I was on Amiodarone for a year, and it worked great until my body got used to it. In the afternoon, with Barbara still fibrillating, the cardiologists presented their plan: they would give Barbara a drug which blocks the AV node and stops the heart for a few seconds. The heart would either restart in normal sinus rhythm, or slowly resume its arrhythmia. In the latter case, the slower heartbeat would allow them to ascertain exactly the nature of the arrhythmia, be it atrial fibrillation, atrial flutter, or something else. I called our regular cardiologist, Dr. Heger (not to be confused with the surgeon Dr. Hagen), to see what he felt about the plan. He assured us that it was a good idea. When we recited the list of doctors involved, he seized on one doctor whom he knows well, and told us to insist that he be physically present during the procedure.
Later in the afternoon, the plan had changed. They decided to add Cardizem to the Amiodarone. If that didn't work, they planned to shock her heart back to sinus rhythm. We didn't like that idea. Neither did Barbara's surgeon, Dr. Hagen, who insisted that we call him if it looked like the shock cardioversion was going to happen.
At about 6 pm Barbara's heart converted to normal sinus rhythm. The pulse rate went from 130 down to her normal 60, and the blood pressure dropped from 130/100 to a more normal 110/65. Even our nurse Ryan let out a whoop!
Now the only issue is the Health Department requirement for three daily sputum samples to rule out tuberculosis. Barbara managed to produce one sample today by coughing long and hard.
Barbara is feeling like a shackled inmate, tied down by her IV tubes and the heart monitor wires. She can't easily move about the room, and cannot leave the room because of the required isolation. She has absolutely no privacy, even to use the toilet. She is awakened every few minutes for various hospital processes. Now that her heart is beating normally, we're planning on checking her out of the hospital tomorrow. If they try to hold her for two more days of sputum samples, they will have a fight on their hands. We feel that she needs to be at home to regain her strength, not to mention her sanity.
Barbara is finally home! I drove her home this afternoon, and she is resting comfortably. Now she can use the bathroom in privacy, and she can walk around the house. We enjoyed some moussaka which Sherri had prepared when she was here on Sunday. Mmm! Barbara ate more than she ever ate at the hospital.
Last night was bad for Barbara. When hit with pain attacks, she had to wait for an hour or more for pain medicine, allowing the pain attacks to become full blown. The same problem continued after I arrived this morning. Only once did the medicine arrive promptly. We longed for home, where she can take the medicine at the onset of the pain.
Leaving the hospital was no easy task. Our cardiologist, Dr. Heger, had advised Barbara against leaving the hospital until they were able to control the heart rate. Subsequent to that advice, Barbara's rhythm converted to normal sinus and the rates returned to normal. So, as we saw it, there was no reason to prolong the agony in the hospital. The doctors had other ideas. They wanted her to stay another night to make sure that the heart would remain in normal rhythm. The doctors put on a "full court press". First, the surgeon, then the cardiology resident, and finally the head doctor of critical care emphatically presented their case. They basically said that Barbara was risking her life by leaving. When questioned, they had to admit that the only risk was that she would go back into atrial fibrillation. That didn't impress us; I go in and out of atrial fibrillation several times a month, and have been experiencing it for 20 years now. The only danger is if the heart rate is uncontrolled, or if the person is not on blood thinners to prevent blood clots.
After royally angering two of the three doctors (unlike the other two, the cardiologist was stern but very nice about it) she made the final step by signing a form that acknowledges that she has been warned, and that she is leaving the hospital against medical advise.
Tonight, Barbara will finally get a full night's sleep!
Barbara got a good night of sleep, her first in a week. She awoke refreshed and ready to live again. Her appetite is strong, and she is enjoying the food that Sherri prepared last Sunday. She should quickly recover the four pounds which she lost in the hospital. Barbara's pain is back in control; she only needed three doses of the breakthrough pain medicine today - in the hospital she had pain attacks every two or three hours.
She made an appointment with our cardiologist this Friday to make sure that she is doing the right thing with the heart medicines. Her heart has been regular since Monday evening.
Barbara is having flashbacks to the trauma which she experienced in the hospital. She breaks down crying. It reminds her of other times in her life when she was being mistreated, with no possibility of escape. She will need some time before she recovers emotionally from this terrible experience.
Barbara saw our cardiologist, Dr. Heger. His staff did an EKG, which showed her heart is in normal, sinus rhythm. Dr. Heger felt that she was unlikely to start fibrillating again, and, if she did, we could address the problem. He wanted to take her off the Amiodarone due to its many bad side effects. He considered Multaq, a new drug like Amiodarone, but without some of the side effects. After talking it over, we agreed to let her go without medication and see what happens. How refreshing for a doctor to include Barbara in the decision making process. The doctors in the hospital could take a lesson from Dr. Heger.
Since coming off of the Amiodarone, Barbara has had no heart irregularities. She has had quite a bit of pain, both in the surgical area and in the normal areas of her abdomen. Sometimes the pain keeps her from sleeping well. Yesterday, she fell asleep several times during the day.
I spent the weekend at Avalon on Catalina Island, helping with the Avalon Benefit 50 Mile Run. I do the computer results during and after the race. It was fun seeing all of our friends, who all asked about Barbara. Jane Evans from Tucson sent some of her home baked cookies to Barbara. Michelle and Brent ran the race and did quite well (10:19), and I enjoyed having my meals with them.
This week Barbara has a blood test in preparation for an appointment with Dr. Lenz next Monday. I can hear him now, "I told you so." Barbara was hoping that the result of the VATS surgery would prompt Lenz to restart chemo. Barbara feels that chemo is what has kept her alive this long. But the VATS pathology did not suggest restarting chemo. We will see.
Monday was a big day for Barbara. First, she had a chest X-ray as ordered by Dr. Hagen, the surgeon. One minor problem: his office had called Radiology and rescheduled her for last Friday, but nobody thought to call Barbara and tell her. Fortunately, Norris is flexible, and they squeezed her in.
We then drove a few blocks to Dr. Hagen's office for her follow-up appointment. An irritating nurse asked questions of Barbara and seemed to ignore the answers. The nurse removed the suture from one of Barbara's three wounds, and pronounced the wounds, "Just fine." When Dr. Hagen arrived, he was his usual self. He did not even look at the wounds. He did not ask about the atrial fibrillation, which was the reason that he wanted to keep Barbara in the hospital. He also did not mention the tuberculosis scare, even though he had said that the Health Dept. would be calling at our home, and possibly quarantine Barbara. He did confirm that the removed tissue showed no cancer and no tuberculosis. The cultures from the tissues will take weeks to months to show anything.
We returned to Norris for an appointment with Dr. Lenz. He expressed surprise that Barbara had a VATS procedure. We were dumbfounded; we thought that we had discussed it with him and received his approval. Looking back through my notes, I could only find an entry saying that he approved of an exploratory surgery by Dr. Selby, if Selby considers it a good idea. Lenz was also shocked by how much tissue Hagen removed, "Three inches by two inches. That's a lot of lung tissue."
Lenz pondered about whether he would order another cat scan before our next meeting. It then occurred to him that a cat scan would show any problems with the surgery, like a sponge still inside Barbara. Accordingly, he ordered a cat scan. The best news was that Barbara's CA19-9 has dropped to 93 (down from 128). Lenz said that cancer doesn't act like that, with the tumor marker fluctuating. Barbara later looked through her records and found similar ups and downs in the CA19-9 just before her last surgery, where they found six tumors. So, we aren't about to rely on the CA19-9 alone. For the first time, Barbara's CEA was elevated. Lenz doesn't know what to make of that change.
Later, Barbara got an H1N1 flu shot, and talked with Pain Management about the increasing frequency of pain. Pamela told us that more pain meds are ready at our pharmacy. We will see Dr. Nemat this Thursday.
For the last week, we have been hanging around the house, watching the wonderful rain come down. We've measured over six inches, and I've pumped water out of the pool several times. On Sunday, Barbara, Sherri, and I hiked up our neighborhood fire road. Barbara amazed us all by making it over a mile. We vowed to hike more often.
Barbara was very upset by our meeting with Pain Management on Thursday. Dr. Nemat's attitude toward Barbara has completely changed. After years of reassuring her that she is on a minimal dose of pain meds, and that she needs to use them with less apprehension, he now talked as if she was abusing the drugs. He is most concerned with her use of the breakthrough meds, specifically Fentora and Actiq. He would rather see her increase the background level of Oxycontin, and first try Dilaudid for breakthrough pain. He intimated that she might be taking the drugs for reasons other than pain, like stress-induced discomfort. Accordingly, he wants her to increase her dose of Lexapro, an anti depression medicine.
Barbara left feeling terrible. She couldn't think straight for the rest of the day. How is she supposed to control the pain? When I offered to take the prescriptions to the pharmacy, she asked me not to. She just wanted to sit and assimilate everything in her mind. She feels that everyone is turning on her: Dr. Lenz, who doesn't think that she has cancer; Dr. Selby, who feels that her problems are "caused" by the medicine, rather than being helped by the medicine; and Dr. Hagen who thinks that Tylenol should be sufficient after surgery.
Barbara is better today. She is immersed in helping daughter Sandra, in Colorado, who has just given birth to a baby girl, Braxsyn Sage Marlow, 6ld, 13oz, and 20 inches long. Sandra is having some pain, and doesn't understand how to care for the bag which is attached to the site of her caesarian section (Barbara found out that it is a pain dispenser bag, which Sandra just pulls out when it is empty). Josh, the ecstatic husband and father, has posted photos on his web site.
Today, it is raining again. It came down so hard overnight that it overflowed my rain gauge (over 2 inches). We feel bad for the people near the burn area, whose homes are being damaged right now. We are several miles from the burn area - our only inconvenience is that I have to pump water out of the swimming pool, periodically.
Last weekend, Barbara and I hiked up our favorite nearby trail. This time she made it over a mile up the steep road. She had some pain, but the motivation kept her going. We were both very pleased with her accomplishment.
Last night we watched a video of RAAM. Our good friend Jennifer Wise had surprised Barbara with the gift, and we thoroughly enjoyed it. It brought back many memories of our RAAM days, and our friendship with Jennifer, who is responsible for the rejuvenation of long distance, unsupported bicycle riding in the USA. She formed the premier organization Randonneurs USA (RUSA), which (among other things) is responsible for a series of rides (brevets) which qualify cyclists for the granddaddy of ultra events, Paris-Brest-Paris, over 700 miles of non-stop cycling every four years in France. She even created the USA version of the event in her Boston-Montreal-Boston event, which I someday hope to ride.
This afternoon, we plan to watch Kanan play in his basketball league.
Barbara saw Dr. Geiseler, an infectious disease specialist. He explained that the culture of the tissue from her lung showed an infection. It is called MAC, or Mycobacterium Avium Complex. It is not contagious, but it reacts similarly to tuberculosis, and is treated with the same vile drugs. It can cause multiple nodules in the lungs, just like we see in Barbara's cat scans. It is much more common in the Midwest and the Eastern U.S. She probably acquired it as a youth in Virginia. She wondered if she should be taking yet another set of drugs, and she called Dr. Lenz. He had already seen the lab findings, and he urged Barbara to take the drugs. She has now been taking them for a few days, and she does have bad side effects, including nausea, vomiting, more abdomen pains, and has waves of feeling quite ill. We really wonder if it is necessary to treat an illness that she has had most of her life.
Dr. Geiseler is a very nice, caring man. We are pleased with him, though we aren't happy with the bad news that he delivered.
We just got back from three nights at Bolsa Chica State Beach. We visited Sherri at her workplace - it was Barbara's first time seeing the store, which sells casual clothing and workout accessories. It is located inside an upscale sports club which caters to the executives working in the Irvine area. Later, Sherri came by the motorhome for dinner, and she brought the movie "Chicago," which we all enjoyed. The rest of the time, Barbara and I just kicked back, with Barbara reading "Game Change" and me playing with my new laptop computer and my police scanner.
Barbara saw my primary care physician, Dr. Jeff Denham, as a new patient this week. I have been extremely happy with him as my doctor since he was recommended to my by my cardiologist, Dr. Heger. As I expected, Dr. Denham took Barbara under his wing, and gently covered all aspects of her medical situation. He was most concerned with the drug regime for the MAC, with the strong tuberculosis drugs. He said that the protocol would require her to take the drugs for many months, and it might not clear the disease. He questioned why the disease needs to be treated, since it appears that she has had it for many years, with no changes in since she got cancer and started seeing the lung spots in the cat scans. Barbara was overjoyed, "How quickly can I stop, and do I risk creating a drug resistant strain of the MAC." He recommended that she stop immediately - in the short time that she has taken the drugs there is no concern as there might be with some antibiotics.
Barbara's spirits are better, now that she is not suffering the effects of the MAC drugs. The only remaining side effect is an altered sense of taste; foods don't taste very good. This was quite evident when Michelle cooked us a great dinner, with a tasty pasta casserole with salmon. I really enjoyed it, but Barbara's taste prevented her from getting the full enjoyment. Even now, a week later, she still thinks coffee doesn't taste right.
The casserole didn't go to waste. We took it with us when we again went to Bolsa Chica State Beach in the motorhome. It was especially yummy after I rode 30 miles on the bike.
We stayed at the beach 4 nights. I took Barbara out on two bike rides. The wind was very strong the first time, and we only made it a mile. But this morning we rode several miles up to Sunset Beach for breakfast.
The rest of the time, we just kicked back. We met Sherri for breakfast on the pier at Huntington Beach. We read a lot: Barbara is reading "Game Change" about all of the political intrigue leading up to the last presidential election. I am reading "Americans in Paris" about the Nazi occupation of Paris.
Barbara is having trouble with the pain medicine plan. Dr. Nemat wants her to use Dilaudid as the drug of choice for breakthrough pain, and resort to Actiq or Fentora only if Dilaudid doesn't provide relief. So far, the Dilaudid doesn't seem to be doing the job, and she is now out of Actiq. We need to have another discussion with Dr. Nemat.
Today we saw Dr. Lenz. Barbara was apprehensive, and with just cause. After Dr. Geiseler prescribed the strong meds for the MAC, Barbara had called Dr. Lenz to ask if he approved. He assured her that she should take the drugs. Subsequently, she saw our internist, Dr. Denham, who felt that there is no justification for taking the drugs, given that this infection has been with her since her young years in Virginia. When Dr. Lenz heard that she had stopped the drugs, he was livid. He felt that an internist had no business making decisions overriding an infectious disease specialist. At one point, he tried to hand Barbara her chart, as if to say, "If you're going to let an internist overrule an infectious disease specialist, then make him your sole doctor." Barbara almost cried. He softened slightly, but insisted that she go back to Dr. Geiseler or visit the infectious specialist who works closely with Dr. Denham. Barbara is now collecting CT scans and MRIs to aid the new doctor in rendering a second opinion.
This whole affair has dragged Barbara's spirits down. She wishes that she never had the VATS surgery, which opened this Pandora's Box of extra medical issues. On top of this, the labs did not run a CA19-9 test last week, even though Dr. Lenz ordered it. It is the only definitive measure of this disease, since the tumors are often invisible on a cat scan. By the way, Barbara's cat scan last week was "normal", meaning that they saw the same spots in her lungs, and they can see where the VATS procedure altered the tissues.
We received another piece of bad news: we stopped by Mission Road Pharmacy, where they have been very helpful getting Barbara's drugs - they even had a package rushed to us in Redding, California, when we were on a motorhome trip. Well, Anthem Blue Cross has struck again: their new Pharmacy contract is with an outfit called ExpressScripts, who have canceled the contract with Mission Road Pharmacy. As they explained to the pharmacy, "You are in competition with our mail order pharmacy, so we will no longer deal with you." We wish that some of this was happening to the people who feel that we don't need health care reform.
Meanwhile, life goes on. We attended a play, "The Subject Was Roses", at the Mark Taper Forum. It had some good acting. The plot was about a dysfunctional family whose son had just come back from World War II, and instead of making the family peaceful again, it amplified the differences between the family members.
On Sunday evening, we attended a concert presented by Yvonne's choral group, Pasadena Pro Musica. The singing was A Capella, with the chorus separated into two halves. The performance was marvelous, and we were impressed with the beautiful harmony. The pieces were all classical in different languages.
Last night Yvonne and Boyd hosted their annual Oscar-night party. Barbara baked her flourless chocolate cake. It was delicious! We all voted on our Oscar favorites, and the one with the most successful picks won. I was in strong competition for the "booby prize" for the worst success rate, but I was beaten by Robin, who intentionally picked the most unlikely winners. My selections were random, since I rarely watch movies. Barbara did better than I, since she has at least heard of some of the movies and the actors.
Barbara had another CT scan. This one was difficult for her: the contrast which they inject into her arm sent pain up the arm and into her chest, and her arm turned bright red. We wonder if she is becoming allergic to the stuff. It certainly sounds like it is irritating the veins. We have since found that the CT scan results were the same as before, except for some evidence of the VATS surgery.
On Thursday, Barbara saw Dr. Nemat, of Pain Management. I was taking Sherri to the airport for a short trip to Vancouver, and Barbara got Junie to drive her. They got lost, and called me for directions - I love teasing about that. From what I hear, Dr. Nemat was not as rough on Barbara about the pain meds. But he continued to insist that she take a larger dose of Lexapro (for depression). Again, our internist, Dr. Denham, had recommended a smaller dose. Barbara is wishing that she would never again have to see a doctor.
On a lighter side, Michelle was in charge of Kanan's school jogathon. Barbara didn't feel up to going, so I went and helped refilling the water jugs used to keep the kids hydrated. Kanan got first in his grade with 44 laps. Here he is, getting a little tired in the last few minutes. Michelle took a celebratory lap with him. He is really getting stronger. We watched him play basketball on Sunday, and he played well.
Gene Morrill came over Friday to close up the walls which our plumber had opened to repair a pipe (remember how my plumbing snake got stuck when I tried to clear a clog). Gene's wife Marilyn brought their granddaughter Stella over for a visit. Gene is really taken by the girl and we can see why. Here she is dancing on the trampoline - she was in ecstasy, running in circles, falling, getting up again, and having a great time.
Sunday evening, Brent and Michelle took us to our favorite Thai restaurant to celebrate Barbara's birthday. Kanan, Jessie, and Brittany were also with us. Kanan immediately got bored, and we got some crayons from the waitress. Kanan and Brent became engrossed in a game on the paper tablecloth: one person draws a squiggly mark on the paper, and the other must make the mark into a picture. Here is the result. It was truly amazing. Brent is SO good with the kids.
This weekend I am flying to Colorado to visit Jaedon. He's been asking to see me and I am eager to go. I will also get to see Sandra and Josh's new baby, Braxsyn Sage Marlow. To my surprise, after I had made my reservations, Sandra decided to fly to California after my visit. It gives less impetus to my trip, but at least I will get to see their home and visit with Josh.
I made a short trip alone to Colorado. The main reason was to see Jaedon - we have both been missing each other. But it also gave me a chance to see the rest of the family. As I stepped out of the security area, Jaedon was the first to spot me, and he jumped into my arms. Here he is walking me out to his waiting mom. We had fun times together. We tramped around in the snow, visited the Money Museum, had lunch at his favorite fast-food place, Culver's, and spent a whole afternoon Geocaching (hunting for hidden containers of trinkets using a GPS unit and coordinates for the caches). Sometimes, we just hung out.
I saw lots of Braxie, with
When I left for home, Sandra also came to California with Jaedon and Braxsyn. She stayed for several days (Jaedon's spring vacation). Some photos:
Jaedon and I repeated some of our rituals, including my random cutting of Jaedon's bagel into weird shapes. It was sad when I put them on the plane to return home.Barbara and I went to a MoveOn.com gathering where Michael Moore's new film, "Capitalism, A Love Story" was shown. It's a little strange being at a meeting where everyone shares the same political philosophy. There was so much cheering, that we missed a lot of the dialog. We had to leave early, since Barbara was in pain. Later we rented the film and viewed it completely.
Barbara is still having issues with getting the pain meds that she needs. Pain Management wants her to increase her background level of Oxycontin, but she gets groggy and still has the pain attacks. We need to have further discussions with Pain Management.
Recently, Jessie and her friend Brittany sang a beautiful rendition of "Lean On Me." Britt's father, who has a high-end sound studio, used his skills to produce a very professional recording. When Jessie and her family were here for dinner, Jessie presented Barbara with a CD containing the impressive effort. Barbara loved it, and we have played it often. I have transcribed it into our iPods and have placed a copy here on our web site. Note that the file is 4MB, so don't attempt over a slow connection, but I'm sure that you will be as impressed with their singing as we are.
I spent a wonderful 4-day weekend at the Colorado River with Brent, Michelle, Jessie, Brittany, Kanan, and Logan. Brent makes the arrangements at this picturesque campground, where we park our motorhomes perched above the shoreline, and we have our own private beach where we moor the boats. Also along were Brent's brother Craig and his wife Ellen, and friends Dan and his family. Both Brent and Dan brought their boats, and we spent a lot of time on the river, including a trip downriver to Lake Havasu and the London Bridge. Barbara stayed at home, since the bouncy 5-hour drive is a little hard on her, stirring up her pain. But she prepared food for me to share. We had a delightful meal of wheat pasta with homemade sauce, meatballs, and olive bread, thanks to her. During the meal, I had Brent play Jessie and Britt's song through his sound system. It was a fun moment. For dessert, Barbara had baked a lemon pound cake using lemons from a tree in our back yard.
I entertained everyone with my telescope, viewing Venus, Mercury, and Saturn. I had a great time, and look forward to going again with them in July. Hopefully, Barbara will be up to going alone then.
I took a bunch of photos which are available here.
Barbara had a peaceful time at home, but she didn't get as much done as she had hoped. We talked nightly via cell phone, and we played Sudoku against each other.
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