Barbara has had two episodes of the shaking that precipitated all of the trouble after the cat scan. Two days after leaving the hospital, she was working in the back yard and the shaking started. Since the day was warm, hypothermia was not the issue this time. I brought her inside and gave her some food, and she popped out of the shaking. Then last weekend we were participating in the Cancer Society 24 hour walk when it happened again. I brought her home and fed her and she improved. So, it appears to be triggered by going too long without eating. Dr. Lenz thinks that there may be some diabetes involved. Of course, the increased level of background pain meds may also be involved. We still haven't completely ruled out the IV contrast used during the cat scan, but the common factor in all three episodes of shaking was an empty stomach.
Friday, Kanan had his birthday party in our yard. The kids had a lot of fun in the pool and on Brent's trampoline, and the pizza was a hit. The kids all got along well, and they only did minor damage to the trampoline, so it was a success.
As I mentioned, Barbara and I attended the American Cancer Society 24 hour walk in Glendale. We both got to do the Survivors' Lap and the Luminaria Lap at night, where they honor loved ones who lost the battle against cancer. We thought of Ron Hershey, Sue Gimble, Tommy (Barbara's brother), Bob Gardner, Mary Fox, Mary Anealian - Barbara shed a few tears.
We attended a fund-raiser bash for Dr. Lenz at the Hyatt Regency in Century City. It was a kickoff for Dr. Lenz work with molecular therapy research. Norris wanted a few of Dr. Lenz's patients at the banquet, and we were invited, courtesy of a benefactor who couldn't attend, but bought a table in absentia. We were delighted to share the evening with the generous people. The Pasadena Pops orchestra entertained the group, and a comedian kept us laughing, even while he conducted a fund raising auction. Dr. Lenz and Taline were surprised to see Barbara after her hospital stay a few days earlier, but Barbara assured them that she wouldn't miss their special event.
Barbara and I drove to Escondido to be with Lena and Curtis and their kids. The family has grown from three to six, with the addition of three foster kids. The new additions are Lilly, 10 months old, Justin, two and a half, and Alesa, three and a half. The three are siblings, and it is wonderful to keep them together. I'm sure that their lives have been disrupted, and it was good to be able to sit and play with them. They craved attention, and they loved sitting in my lap reading children's books. It's a big job for Curtis and Lena. We can only imagine, recalling how difficult it was having Jaedon living with us, and they have three new ones (plus Antonio, who can be difficult at times).
Friday evening, a babysitter was arranged, and Curtis, Lena, Barbara, and I went to a singing program at their church. For once, Lena was not in the production - she's clearly got enough on her plate already. The production was very good, with a wide range of songs from musicals.
This morning, Barbara and I hiked up our favorite mountain trail. We made it almost a mile up - clearly, we both are really out of shape. We vow to do this more often and build up our stamina.
At Barbara's last visit with Dr. Lenz, he informed her that her CA19-9 is now 94. This is a bad trend: from 52 to 66, and now 94. Because of this result, and some concerns in the cat scan, Dr. Lenz will repeat the cat scan in three months, instead of waiting for six months.
Barbara had a routine appointment with Dr. Nemat of Pain Management. Since the new pain medicine approach seems to be working, there will be no change in the meds.
Barbara and I met with our internist, Dr. Denham. He is wonderful. He sees us in his personal office and spends lots of time discussing all of Barbara's recent experiences. He is really treating the "whole person". He was especially concerned with Barbara's possible reaction to the contrast used for the cat scan. We later looked back in this log, and realized that she had experienced an allergic-type reaction during the last cat scan. He proposed a special protocol for Barbara's next cat scan, if contrast is necessary. This would involve premedicating with steroids, and having a doctor close by in case Barbara suffers a reaction worse than the last two. He suggested that we discuss this protocol with Dr. Lenz. Dr. Denham was quite concerned that they gave Barbara NarCan, causing her to suffer withdrawals. One of his specialties is emergency medicine, where he has had to administer NarCan. He says that you never give the dose all at once, but instead in small amounts while watching the patient carefully for positive or negative signs. I wish that he had been there that day.
We received a wonderful gift from Mission Road Pharmacy, a beautiful arrangement of orchids and driftwood, and a box of delicious chocolates. Barbara and Booth are enjoying it. We have used Mission road Pharmacy for many of Barbara's meds, and they have been extremely helpful. Amy, who runs the pharmacy, is especially cordial. As an example of their service, Barbara was running low when we were in Oregon, and they arranged to overnight FedEx the meds to an RV park in Redding, CA. We received it the next morning. And, for this, they would not accept repayment of their shipping expense. Whenever we had difficulty with the insurance coverage, they would arrange for Barbara to have an emergency supply.
A few months ago, the pharmacy informed us that Blue Cross (through its pharmacy service ExpressScripts) had cancelled the contract with Mission Road Pharmacy. This meant that no one insured by Blue Cross could obtain their meds from Mission Road. We were devastated. They were our lifeline. Clearly, this made a big impact on the pharmacy's business. The reason given by ExpressScripts was that Mission Road was drawing too much business away from ExpressScripts own mail-order pharmacy. Well, there is a reason for this: both Barbara and I have had several serious problems with the mail order outfits employed by Blue Cross. Even though we pay more to obtain meds locally, we prefer it for the amazing service which we get from Mission Road.
We have complained loudly. I filed a protest with the HR people at Caltech. Then, when Caltech had a "Health Fair", I complained at the Blue Cross booth. They called Barbara back, but didn't really have a good explanation. Barbara called the Blue Cross agent who represents Caltech, and voiced our objections. Finally, we informed Amy of our actions. She asked that we write a letter that she could use in legal and legislative forums to try to rectify the situation. I was glad to write the letter. The floral arrangement was in thanks for our efforts.
Sandra flew from Colorado with Jaedon and baby Braxsyn and stayed with us five days. It was a fun visit, and gave us a chance to get acquainted with Braxie. Jaedon went trick-or-treating with Kanan in our neighborhood. Sherri also had Jaedon help her and Brian decorate a haunted house that Brian does every year, and they did the rounds of stores in Montrose that are open for Halloween.
Jaedon and I went geocaching, as we have done in the past. It was especially important for JJ, since he had me all to himself for several hours. At the end of the geocaching, we sat in our local park and chatted. It reaffirmed our strong bond. Later, we went swimming together. Check out the photos from the visit here.
Michelle has been coaching a running group which is planning to run the Catalina Eco Marathon this weekend. They did their last training run from our house Saturday morning, running up in the Verdugo Mountains. After the run, they had a potluck brunch in our back yard, with the families joining them for food, swimming, and the kids used the trampoline. Jack prepared a special creation of grits with shrimp and bacon (yummy). Michelle passed out team shirts that they will proudly wear during the marathon. The shirts are the wick-dry type and carry the logo of Brent's company CR&R. We wish them all luck at the marathon this Saturday.
Sherri was also with us Saturday, baking a special birthday cake for Brian's 40th birthday. He had asked for an ice cream cake, and Sherri used Barbara's recipe for the flourless chocolate cake, which she made in layers interspersed with ice cream. Here is the finished product. Barbara and I were invited to the party where Sherri also cooked hors d'oeuvres, including chicken strips and three types of homemade pizza. We especially enjoyed chatting with Brian's friends, who were truly impressive. Barbara and I had several delightful and thoughtful discussions. Clearly good people attract good people, and Brian is remarkable.
Last week, Michelle and Brent made an offer on a home. It's an old Craftsman home, built in the early 1900's. In contrast to the place that they are renting now, it has a yard, and street is drivable by their motorhome. We were all excited for them. The next step was the home inspection, and Barbara was able to recommend an inspector - Brian's friend whom we met at Brian's birthday party. Barbara was invited to come along and get her first glimpse at the home. The inspector immediately spotted a deal-breaker: the foundation is river rock. Although it's been just fine for all these years, it was a liability for the future. Also, the wiring is old knob and tube technology. I wouldn't even know what that is, but our little house in the back yard has knob and tube wiring. Added to the problems was the fact that the second bathroom was added without proper permits, and the city would not allow a room addition (that Brent and Michelle wanted) if it included another bathroom. More yet: it's just over the line into Alhambra schools, and Jessie and Kanan are enrolled in South Pasadena schools, where we all want them to stay. So, with dejection, they rescinded the offer. Barbara was happy to be with them during this important moment.
On Thursday, Barbara was to have an appointment with Pain Management. While driving her to Norris, she had a pain attack, and then began to feel sick. We pulled into a nice park and rested a while. I played Jessie's song on the iPod to calm Barbara. I think that Barbara's reluctance to see Pain Management contributed to the problem. Finally, we called them and cancelled the appointment. This didn't surprise us; we try to maintain our normal activities, but sometimes need to change plans due to the medical issues.
We just got word that Lexi is coming to Los Angeles (from her home in Las Vegas). She will be going with Jessie to Magic Mountain amusement park today - I hope that the rain doesn't spoil the occasion. Tomorrow, we will all go for brunch at Foxie's restaurant. It will be fun to see Lexi again.
We've been having video conferences via Skype with Jaedon (and Sandi, Braxie, Nathan, and Josh). Jaedon and Nathan become very animated when they have a TV audience. It's neat to see them, as well as talk with them.
Today we attended a recital by our friend Junie. She plays the Koto, a Japanese stringed instrument. It is the source of the sounds that I have always associated with Japan. The music was wonderful. Junie and her colleague played several pieces, from modern to ancient. Junie's instructor explained the instrument and each of the pieces in English, for those of us who don't know Japanese. Then a third lady joined in and played a bass Koto, which had a uniquely different sound. We thoroughly enjoyed seeing Junie doing what she loves.
For Thanksgiving, we took the motorhome to Silver Strand State Beach, south of Coronado in the San Diego area. Michelle, Brent, and Kanan parked their motorhome near ours, and we enjoyed the holiday together. Sherri and Brian drove down for the day, and we all partook of the sumptuous feast prepared by Barbara, Michelle, and Sherri - not to forget Brian, who made his special mashed potatoes. Barbara had cooked for several days, as is her custom. She felt very good seeing how much we all enjoyed the food.
Michelle has a close friend Annie, who lives in Coronado. She and her husband Dave and daughter Carolyn, spent time with us. Kanan stayed at their home one night. We all had a great time. Here are some photos from the weekend.
Leaving Coronado, we drove the short distance to Curtis and Lena in Escondido. We stayed overnight, and enjoyed conversations with them, and we had fun playing with their son Antonio and their three foster children. The foster kids really seek attention; every time I sat down one of them would jump into my lap and ask me to read to them. It made me feel good to spend time with them. We've already scheduled another visit, and, since the foster kids have left, we intend to spoil Antonio with lots of our undivided attention.
We saw Dr. Nemat of Pain Management. He wants Barbara to continue with her pain meds with no changes. She still has frequent pain, but the meds keep it from getting out of hand.
We attended a protest coordinated by MoveOn.org. A small crowd gathered in front of Henry Waxman's office in LA. Waxman is a strong Democratic backer of Obama's plan to continue the Bush tax cuts only for people earning less than $250,000 per year. So, the gathering was more of a show of support, rather than a protest.
We got word from Mission Road Pharmacy that their contract with Anthem Blue Cross has been reinstated. We are delighted that our complaints, and those of others, reversed the insurance's spiteful canceling of the contract. It will be enjoyable working with Amy again.
Barbara had another cat scan yesterday. After the reaction to the contrast dye last time, this cat scan was taken without dye. Without the need for the IV, the scan is over very quickly; Barbara was only in the procedure room for 10 minutes or so.
As I sat waiting for her, another patient had her mandatory briefing by a physician before her first cat scan. The doctor warned her about occasional allergic reactions to the contrast dye, with symptoms from warmth, to hives, to systemic reactions affecting internal organs like the heart. Barbara and I have never received such a briefing, so we somehow slipped through the cracks seven years ago. After Barbara's reaction last time, Dr. Lenz talked to the head of radiology, who expressed surprise that someone could experience difficulty. It leaves me wondering, "Where is the disconnect?" Why is one doctor warning about possible reactions, and another doctor is acting as if it doesn't happen? We have had our doubts about Norris' radiology department ever since the analysis of one of Barbara's cat scans said, "The spermatic ducts are unremarkable." Of course, women don't have spermatic ducts.
Last weekend, we visited Curtis and Lena again. Lena's singing group, Women In Treble, had a Christmas concert, and we were fortunate to be able to attend. We loved the music, and we are amazed at Lena's beautiful soprano voice. We played with Antonio, but we missed the three foster kids - the court has sent them to live with their grandparents. It must be traumatic for children to have their lives upset repeatedly.
Gene and Marilyn Morrill included us in a holiday family dinner. Years ago, (before I was in the picture) Barbara dated Gene, and they have maintained a friendship ever since. Marilyn's daughter Tiffany and her husband and kids were there. Gene's kids, Nu and Cherie and their families were also with us. Gene's children still call Barbara "Mom", and it was fun to catch up on all of their activities. Marilyn maintains an immaculate house. When Barbara admired the home, Marilyn offered to help Barbara declutter our house. What a generous gift - but I must admit a little trepidation over the worst clutter: my stuff. It reminds me of those Pack Rat shows on TV, where one of the pack rats is reluctant to part with their junk. Let's see if I can behave.
We plan to have Christmas dinner at our house. Barbara will again be cooking Bastilla, my favorite. We expect to have Michelle's family, Sherri and Brian, Curtis and Lena. Sherri and Brian are going to provide us with a Christmas tree this weekend. Should be a festive holiday.
We saw Dr. Lenz and Taline on Monday. They reported that the cat scan showed a discontinuity on her liver at the site of her surgeries. They can't say for sure if it is anything to worry about. To be safe, Lenz has ordered a pet scan next month. Barbara's CA19-9 has risen from 94 to 116 - a bad sign. Lenz says that it is fluctuating, but that is just wishful thinking; it has been marching steadily upward since her VATS procedure early this year.
Sherri and Brian bought us a Christmas tree and delivered it here. Last night Barbara and I decorated it, and we are feeling more Christmassy now. Barbara is already cooking for the Christmas dinner. She is making Bastilla, a Moroccan dish (and my favorite food of all time). For the Bastilla, she needs blanched whole almonds. Trader Joe's used to sell them, but no longer does. Barbara had to peel dozens of almonds and blanch them herself - talk about dedication! She is also making two flourless chocolate cakes (and lots more). We will have a full house on Christmas, with Brent, Michelle, Kanan, Jessie, Sherri, Brian, Curtis, Lena, and Antonio.
Barbara just heard that another cholangio patient, Teddy, whom we had the pleasure of meeting when we were Arizona, passed away. He went downhill fast. In February, his scans showed no disease. Yet his CA19-9 kept rising, and the doctors couldn't explain why. This hits us hard. We felt a kinship with him after that brief meeting. And we are mindful that Barbara is experiencing the same scenario: nothing significant in the scans, but her CA19-9 keeps rising. Barbara has been aware of too many cholangio patients who followed the same unexpected downward progression.
Barbara is cooking up a storm for our Christmas gathering tomorrow. Meanwhile, our neighbor is throwing a party tonight, and he wanted a "white Christmas." He hired a crew with a snow machine, and they blew the snow-like foam all over his yard and ours. The kids loved it, and they played until covered with the stuff. Here, a live "snowman" takes off running. Carl looks like he just blasted his brother Gavin.
We had a fun Christmas. Lena and Curtis drove up from Escondido with Antonio. Michelle, Brent, Kanan, and Jessie were here, as were Sherri and Brian. The two boys, Kanan and Antonio, had fun playing together. The rest of us kicked back and enjoyed Barbara's special cooking: Bastilla! Michelle brought a wild rice salad and Deviled eggs. Lena brought pomegranate seeds and cookies that she had baked with Antonio. Sherri brought her appetite - though it is no match with my appetite. Barbara also prepared her special salad, apple cider, hummus, spiced nuts, and two flourless chocolate cakes - all homemade (Barbara wouldn't have it any other way).
Today, I was out walking around the neighborhood trying out my new GPS watch from Santa. I felt comfortable with the other children on the street all of us trying out our new toys.
Here are some photos.
It's been hectic here. Today, for example, Barbara took me for a minor throat surgery. I had my uvula removed. It's the thingy that hangs down in the back of the throat and has no function. Mine was occasionally swelling due to allergies or surgeries (intubation) and partially blocking my airway - scary! When we got home, our water service was off. That's when you find out how much you need water. The city is replacing the water meters in our neighborhood today. So, naturally, I call the city. The meter installer returns, and says that he didn't replace our meter since the city shutoff valve was broken off. He wasn't very bright. He forgot that he had turned off a second valve, called a "customer valve", that my parents had installed years ago (and I didn't know existed). So, here we are: Barbara is having a pain attack, I am hurting some from the surgery, and we are arguing with the city about who is responsible for the water failure. Finally, a supervisor showed up and spotted the second valve and our water service was restored. Just a normal day in our lives.
Barbara had a pet scan two weeks ago. They don't use IV contrast, so we didn't have to worry about a reaction like the one she had during her cat scan. Last week we saw Dr. Lenz, and he reported that the pet scan showed nothing significant. Good news, "sort of". Barbara has learned from her cholangio chat groups on the internet that cholangio patients sometimes die in spite of clear scans. We are still waiting for her CA19-9 result.
We just returned from a weekend at Catalina. I do the race results for the Avalon 50 Mile Benefit Run. Barbara came along this year and had fun chatting with our long-time running friends. Brent and Michelle ran the race, along with their friend Ron. They all finished, although Michelle had a tough time with muscle tightness. The day was quite warm, and it was hard to stay hydrated. We missed some of our friends. Bob Moses was missing due to knee problems. Jane and Gene Joseph stayed home in Tucson to be with friends affected by the Tucson shooting of the congresswoman and others. Thank goodness, the boat rides were smooth. We had a nice long chat with Gary Ruttenberg, who has been a mainstay of the race for many years. It was fun getting to know him better.
In between these activities, I found time to see my ENT doctor about a persistent nosebleed, which now appears to be unrelated to the blood thinner - (I temporarily stopped Warfarin for all of these medical procedures). I saw my proctologist (enough said). Then I saw my skin doctor, who took two biopsies from my back - the spots are unreachable, so I need Barbara to care for them. Then our power fails for several hours during a windstorm. Luckily, we have a backup generator, so we sat "fat, dumb, and happy" watching TV with Barbara's heating pad and electric bed working just fine. I actually enjoyed gloating over our neighbors - shame on me!
Barbara got word that her CA19-9 last month was 110.6, down a little from 116. The lab work is now being done at Norris, so we should get the results a little faster. I doubt that it is any more accurate, in spite of the result being given in such precision. The engineer in me says that the measurement is not likely that precise.
Saturday, we saw Kanan play in a basketball game. He's becoming a pretty good player, and a good sport. Here he is shooting a free throw. Afterward, Michelle had us over for chicken tostadas - my favorite! It was fun being with her and Brent. And just today, I got word that the escrow had closed on their home. So now they're investing in their own future, instead of someone else's.
Sunday was Super Bowl. Robb and Mary invited us to their 25th Super Bowl party. As you can imagine, they have it down to a science: good people, great food, and 25 years of sports memorabilia decorating the whole house. Barbara brought her "peanut butter bug", a dip made in the shape of a big bug with licorice for legs and antennae. The game is wasted on Barbara and me - we enjoy the commercials as much as the game. I wanted to bring Boyd, since he is a sports addict just like Robb and the others. But Boyd needed to stay home with Yvonne, who had just returned from a traumatic trip to Texas where she moved her abrasive mother into a care facility. We had to leave the party early when Barbara had a pain attack.
I spoke to the Glendale Planning Commission in support of the proposed Glendale Safe Streets Plan, which would encourage city support for bike and pedestrian improvements. I will speak again to the Parks Commission later this week. I already see some improvement in Glendale, with bike lanes and city bike rides.
I had a little surgery on my back. The dermatologist noticed a troubling spot, and he did a biopsy. It came back halfway between benign and melanoma, so he dug the whole thing out. It didn't hurt, but it is a nuisance having to dress the surgery every day. I can't even reach it, and I rely on Barbara's nursing skills to keep it maintained.
We are planning an RV trip to Morro Bay. It'll be a nice getaway.
We took the motorhome to Morro Bay for the weekend. Michelle, Brent, and some of their friends and running partners ran the Montana del Oro 50K and other shorter versions of the race. Here are my photos of the group. Barbara and I enjoyed cheering them on. We stayed an extra day to enjoy the scenic state park. As usual, it was emotionally refreshing to leave our normal surroundings and just "kick back."
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