Over the weekend, Kanan brought some friends to our house for a swim party. Michelle does all of the work, and Barbara and I have the pleasure of seeing the boys have fun. We have pool toys, a pool basketball net, badminton, a swing set, trees to climb, and most importantly, Brent's trampoline. The boys had so much fun that Kanan had some other friends over for another party on Wednesday. It's great to see the yard being enjoyed.
Today was to be a routine appointment with pain management, but the result was anything but routine. Just before seeing Pamela and Dr. Nemat, Barbara was hit with a pain attack. They have never witnessed her agony first-hand. Dr. Nemat suggested that she is definitely a candidate for a pain pump. This is pain medicine dispenser buried under the fat of the belly, with a catheter going around the side to the spine, all under the skin. It discharges the pain medicine exactly where it belongs: into the spinal column where the pain signals travel.
Recalling back when Barbara was in the hospital for her last surgery, they couldn't cure her pain with intravenous medicine - when they gave her enough to relieve the pain, she became nauseous from the medicine circulating throughout her body. In desperation, they installed an "epidural", which goes into the spine, but has an external catheter and pump. It worked miracles - her pain was relieved, and she had no nausea. I asked some questions and learned that some patients have such a dispenser installed under the skin, so that it can be used for years. For the last year, I have felt that such a pain pump was the only solution for Barbara's frequent pain. Finally, it looks like my wish may come true. If these pain episodes could be controlled, Barbara's quality of life would be much improved.
A week ago, we drove our motorhome to Arizona to visit Jaedon and Sandra. Jaedon is doing well, but he is a little frustrated at having to stay inside - the midday temperatures hover around 110 degrees Fahrenheit (43 Celsius). He was delighted to spend some time with Papa and Ma. We all went out to the Golden Corral, an eat-all-you-can plane (my kind of place). Here we are after stuffing our faces.
I had planned to take Jaedon out geocaching, but both Sandra and Josh wanted to go along. Each of us found at least one geocache, and Josh found several. Sandra found this geocache hidden under the stadium seats. Here Jaedon goes through the loot, deciding which trinket he wants to trade.
We spent time in Sandra's pool beating the heat. Jaedon enjoyed the stickers he received at In-and-Out - ahh, the simple pleasures of life
On Monday, we accompanied Sandra to a court session to determine child support. It was intimidating for Sandra to plead her own case while Jason is represented by an attorney. But Sandra held her own, and we are proud of her. The court provided her with an adequate amount of child support. Jason may feel a little pinched, as we learned that he and Patricia are expecting another child in two months. This makes three children in the house, two of them Jason's.
When we left for California, Jaedon was sad and cried a bit. We have talked with him on the phone several times, and we will see him again next month.
Saturday was the Castaic Triathlon. Michelle and Brent wanted to run the race competitively, but someone needed to accompany Kanan. They asked me and I was delighted to accept. It's been 20 years since my last triathlon, and I can't run due to my knees, but I knew that I could help him through the swim and bike ride. It was more fun than I could have dreamed. Kanan was so spirited: when he was becoming tired in the swim, I reminded him that the race director said that he can rest on the swim buoys. He responded, "Papa, I don't stop during a race!" He was very alert during the whole race; near the end of the swim, I was unaware that we were in shallow water until Kanan stood up and started running out of the water, leaving me behind.
The bike ride went through a county jail. Both Kanan and I were "all eyes" as we rode around several of the prison buildings and lots of fences with razor wire. We were the last competitors by that time, and we had a sheriff escort behind us for the last 5 miles of the bike ride.
We started the run together, but I suggested that Kanan run ahead since he seemed to have the energy. Well, he left me behind and took off running. The three-mile run course comes near the finish line at two miles, and as I approached that point, I could see Kanan coming into the finish. I stepped off the course, gave him a congratulatory hug, and then returned to finish my last mile. So, he "beat me by a mile!"
Everyone had a great time! Here are some photos, taken by Barbara, who cheered us on.
Barbara has been doing a lot of thinking about the pain pump. She has done research and is worried about warnings to limit one's activity, to avoid stressing the catheter. She was hoping to do some bike riding and walking once she has the pain under control. There are also other concerns - one of the worst was about complications where the catheter enters the spine. In the worst case, an abscess could form which could conceivably result in paralysis. It is also possible for a programming error to cause an overdose of pain medicine. With pills, she can monitor the dosage; that's not possible with the pain pump. She plans to talk some more with the Pain Management people about her concerns.
I took Barbara on a bike ride, her first time on the bike in five years. She was apprehensive as we drove to the start, but she was committed. We planned to ride around the Rose Bowl and the adjoining golf course, a frequently used three mile route for cyclists and joggers. She was unstable at first, and we rode around the parking lot for a while. Then we took off. Not having ridden for so long, Barbara set herself too fast a pace - in fact, I had to work hard to keep up. Soon the effort got to her, and she had to rest. She was also having trouble making the gears shift. It seems like both Barbara AND the bike had suffered from the inactivity. We rested at the halfway point, with the uphill behind us, and the remainder of the loop was downhill. She also started having a pain attack. We judged that we could ride back to the car quicker that it would take me to go fetch the car and rescue her. So, although it was difficult, she completed the ride and wants to do it again. I immediately took the bike to the bike shop to replace the gear shifters and give it a tune-up. We'll give it another try next week.
Today I had a second prostate biopsy. The first one was a year ago, but my PSA had risen a little. My doctor thought that it would be prudent to rule out any cancer (or at least get an early diagnosis). The exam was done at Norris and was painless, if a little uncomfortable. I will learn the result on Friday. Meanwhile, Barbara's brother Bill, who has been treated for prostate cancer, sent me a great book, "You Can Beat Prostate Cancer - and You Don't Need Surgery to Do it," by Robert J. Marckini. He is a prostate cancer survivor who chose proton beam radiation. He discusses all of the ramifications of the disease, its diagnosis, and its treatment, from the point of view of a patient, rather than a doctor. I learned many things: among other facts was a caution to avoid things which stimulate the prostate before having a PSA test. As expected, a digital prostate exam, and recent sex could result in incorrect PSA values. But, to my surprise, he also mentioned that bicycle riding can drive up the PSA level. I wonder if my fluctuating PSA could be due to bike rides shortly before the test.
This weekend we will celebrate Jaedon's birthday. Sandra is coming here with him tomorrow, and we have several things planned. I want to go on a geocache hike with him. He also has appointments with his psychiatrist and his counselor. It will be a crowded three days.
On Friday, Barbara has an appointment with Pain Management. We will discuss the pain pump some more, but I doubt that we will go ahead with it. There are just too many negatives associated with the pump.
Jaedon arrived on Thursday with Sandra and Josh. We had a fun birthday party for Jaedon on Saturday, with neighbor kids joining in on the fun in the pool. Pizza and Barbara's special salad were served, and everyone had fun. Jaedon had a bad outburst, and needed to be calmed down away from the guests. These explosions happened several times through the weekend. Most of the time, however, Jaedon was his pleasant self, with his witty sayings and his endless energy. We had some fun times where we repeated some of our rituals from before - for instance, I always cut his breakfast bagel into four pieces, but I make them as oddly shaped as I can - he loves it!
Here he is with his Lego creation. He explains its features to Ma, and then lets Ma take it for a spin.
On Saturday, Sandra and I watched Kanan run the Castaic Triathlon. This time, he wanted his dad Conrad to accompany him, so I was the cheerleader. Click here for lots of photos. Everybody had a great time, and all of them got medals for placing.
Bad news on my prostate: the biopsy showed that I do indeed have prostate cancer. Of twelve tissue samples, only one showed cancer, which may indicate that it has not spread very much. The doctor who performed the biopsy said that it should not alarm me since it is very treatable at this early stage. I got him to fax me the written report, and it shows a Gleason score of (4+4) = 8. That represents two parts of the sample, where each part received a score of 4, with 5 being the worst. So, this doesn't sound very good to me. I see the urologist on Thursday, and I should find out more then.
More on my prostate cancer:
I was all convinced to do proton therapy at Loma Linda, based on research by Barbara's brother Bill. The book that he sent me was rather convincing. But as I read the book, I couldn't help thinking that it sounded like an info-mercial for Loma Linda. Barbara, of course, was doing tons of research on the internet. She observed that none of the established prostate cancer sites mentioned proton therapy; she only saw it on the sites devoted specifically to proton therapy.
So, I had a more open mind when I saw my urologist, Dr. Gary Lieskovsky at Norris. He has done several thousand prostate surgeries, and he worked with Dr. Patrick Walsh, who developed nerve-sparing surgery. Dr. Lieskovsky convinced me that surgery is the best option, since we have caught this so early, and it is very unlikely that it has spread beyond the prostate. It is a very aggressive cancer (Gleason score 4+4 = 8) and we can achieve a complete cure if it is still confined to the prostate. Radiation entails the possibility that some cells will survive. If that happens, it is very bad; since surgery after radiation is very difficult (everything is welded together). Additionally, with surgery he can see and touch the tissues to determine if the cancer has escaped the prostate. The removed tissue is sent to the pathologist, who also checks for clear margins. None of this is possible with non-invasive treatments like radiation.
So, I am scheduled for surgery on Tuesday, August 25. I am very comfortable with it. I'm not alarmed at all - but ask me again on Monday!
Meanwhile (back to our regularly scheduled program), Barbara continues as before, with frequent severe pain attacks. Pain Management upped her Fentora dose from 200mg to 400mg, but that left her woozy and unable to drive or do much of anything. There is no 300mg dose, so they prescribed Actiq, which is a suckable lollypop stick that you swab on the inside of the cheek. It tastes bad, even though it is loaded with sugary stuff. It comes in 600mg, of which about half is the Fentora ingredient. But don't call it a "lollypop". Pain Management didn't like me using that term. Also, they insisted that we lock it up, since it would be attractive to children, and it could kill anyone who is not already taking opiates.
We celebrated Michelle's birthday at the Cheesecake Factory. The food was great, and the comradery was even better. Michelle has a great day, highlighted by the aerobics class that she teaches: they were all lying on their backs when they started singing Happy Birthday.
Michelle and Brent have invited us to go with them to the Colorado River. I really want to go, but Barbara feels that it is too much driving for her. So we have decided that I should go without her. It will be a last fling before my surgery.
I spent two great days at the Colorado River with Brent, Michelle, Jessie, and Kanan, and their friends. Michelle kept me well fed, and Brent kept me (and everyone else) entertained with boat rides and rafting behind the boat. Check out the photos here.
Curtis and Lena and their son Antonio visited us yesterday. I suggested that Lena and I take Antonio to the Griffith Observatory to see the planetarium show and all of the wonderful exhibits on astronomy and space. I took a few photos:
Tomorrow, I go to Norris for my pre-op tests. The big day is Tuesday. My surgery is scheduled for 7:30 am. I'm still not nervous, but tomorrow may be another story. Barbara will be taking me to the hospital, and waiting through my surgery. In the afternoon, Michelle will take over and stay with me all night long. I've had lots of minor surgeries, but never anything major like this, so I don't really know what to expect. I will know soon enough!
My prostate surgery was completely successful. Dr. Lieskovsky said that it looked like a normal prostate when he removed it. He took some lymph nodes, which also looked good. The pathology report confirmed his anticipated results: the cancer was confined to a small area where the one biopsy sample had detected it. All margins were clear and the lymph nodes had no cancer. This is everything that we hoped for - it looks like a complete cure.
I'm having a little trouble getting back on my feet. I have a good bit of pain, and I'm tired all the time. So, I'll fill in more details later.
Here is the prostate-less, world-class gimp in his most comfortable pose. Finally, I'm feeling better emotionally. I had heard that post surgical depression is common, and now I'm a believer.
Not that I didn't have lots of problems to prolong my "down" feelings. To start with, I must keep a Foley catheter in my urethra until next Tuesday. It is a real pain: very uncomfortable, hurting my "privates" at times. As I sleep (or, at least TRY to sleep) I change sides often during the night. When I want to turn over, I must sit up to reroute the tubing. The other bother was a Penrose catheter which collects abdominal fluids (mostly urine) from the surgical site. The bag leaked in the hospital and had to be replaced several times. Thus, it was not surprising that it would start to leak at home. The 24-hour wetness, along with the Foley catheter rubbing against the skin, caused major skin sensitivity. Finally, they removed the Penrose on Thursday.
I am taking a sulfa drug, Bactrim, to prevent a bladder infection. Unfortunately, it comes with side effects: diarrhea for five days and nervous disorders like insomnia and restless leg syndrome. I haven't slept for more than two hours at a time for the last week. At least the drug runs out next week. Another drug, Vicodin, for pain, caused nausea, and prevented me from eating - in Barbara's words, "This is the first time in our 26 years together, that I have seen him unable to eat." Fortunately, the pain was minimal and I stopped the Vicodin two days after coming home from the hospital. Now I have the opposite problem: I get the munchies at 3 am when I can't sleep.
The stay in the hospital was both good and bad. The nursing staff was either wonderful, or totally incompetent: one nurse's aide fiddled with the Penrose bag, and opened the valve, dumping the entire contents on me and into the bed. As she tried to change the sheets, she got distracted by something and left me hanging to the railing in pain.
This whole ordeal has been very taxing to Barbara. She takes me to Norris and to my Coumadin clinic. She makes runs to fetch supplies, like feminine pads to soak up the spillage from the Penrose bag (talk about "gender inappropriate!"). But most of all, she is by my side to help me through the ordeal. All the while, she is still beset with the other ever-present problems, like her pain attacks, fights with our medical insurance, problems with our children and grandchildren. These trials take their toll on her emotional stability.
In the midst of all this, there have been some real bright moments. Like when Esther brought us 'fixins for dinner. And a few days later when Michelle and family brought us dinner, along with photos of our Colorado River trip. During their visit, I was able to help Jessie with her algebra homework - she was having trouble understanding simultaneous equations. Other friends have been wonderful with their wishes for speedy recovery. We even learned that Junie's husband, Ken, drove by our house during the week to make sure that we were not near the wildfire which threatened parts of Glendale.
I'm counting the hours until I see Dr. Lieskovsky on Tuesday and have this blasted catheter removed.
On Tuesday, I had my catheter removed. Hip, hip, hurray! It was quite a scene: the doctor and two med students (who were more embarrassed than I was) jammed into a bathroom. I stood over the toilet while the doctor pumped saline water into my bladder, and then removed the catheter. The gusher went all over the place. The doctor didn't care - he was more interested in having me stop and restart the flow using my muscles. Now that I knew the correct muscle action, he instructed me to practice the muscle contractions three times a day with thirty contractions each session. Women know these as Kegel exercises, which are prescribed after childbirth to retrain the damaged muscles. Now I join the ranks of women who shop for pads in the feminine section of the grocery store. I thought that I would be embarrassed, but I'm not. (Not nearly as bad as when I bought panty hose for Barbara and a fireman in line with me said, "Hey big guy, I don't think those will fit you.") I am told to expect the incontinence to continue for possibly three months, but 99 percent of men with the nerve-sparing surgery regain full bladder control.
The doctor released me to do as much exercise as I want, except no bicycle riding for a month (which would me difficult in diapers anyway). I've been swimming every day now, and thoroughly enjoying it. All of the post surgery issues are tolerable, considering that I have been cured of cancer. Barbara and I plan to attend the American Cancer Society Relay for Hope in Glendale. Now I can participate as a cancer survivor, rather than just as a caregiver. I will wear my "Cancer Sucks" t-shirt with pride.
Barbara continues to have several pain attacks each day. If anything, they seem to be getting worse. She had a cat scan Friday. She went alone since I had a medical appointment myself. Unfortunately, they made her wait for two hours, and, as she was starting the cat scan, she had a pain attack. The technician was very good with her, helping her with her pain medicine before continuing the procedure. She sees Dr Lenz this Thursday to get the cat scan results. Her CA19-9 is still around 70, which is alarming (normal is 37 and below).
We got some bad news today. Barbara found out that her CA19-9 has risen to 95. Taline tried to minimize the concern since nothing much showed up in the cat scan. Barbara knows, from all of her cancer groups on the internet, that the disease can come back without being visible in the cat scans. And how do you explain the increased intensity and frequency of Barbara's pain attacks. Barbara asked for a PET scan, but Taline said that we must wait for Dr. Lenz to return from overseas.
Michelle had Kanan's birthday party in our yard. Barbara always enjoys the festivities. The photo shows Brent, Michelle, Conrad's mom Eleanor, and Conrad in the back eyeing the gifts. The kids spent most of the time in the pool, but took time out for presents, of course. A big hit was a book on bugs, from Ma, of course. Here is the rowdy gang - actually, they were very well behaved, if perhaps a little loud.
Michelle and Brent bought a new motorhome. Michelle welcomes Barbara and me for our first look. Ma is overwhelmed. They have already scheduled a weekend at the Colorado River, and I have invited myself to go along - but I'll bring our RV since I stay up late at night listening to the scanner and playing with the computer.
Barbara and I watched Kanan play football last weekend. The coach gave several "pep talks", which were definitely in order. As Conrad said, "This is painful to watch." But they have to start somewhere. Kanan played several different positions, including pass receiver and center.
I've been helping Jessie with her Chemistry and Math studies. I'm blown away that they are learning organic chemistry - everything that I took in high school and college was inorganic (which is simpler). At least I can be of some help with the math. We have agreed to meet weekly.
With Barbara's CA19-9 going up so much, she is pushing Dr Lenz for a PET scan, which would show any extra metabolic activity in the spots around her abdomen. He finally relented, and she is scheduled for a PET scan next Wednesday. It's only reasonable to believe that the CA19-9 and all of the pain indicate that something is going wrong.
My recovery from the prostate surgery continues. I have been warned that I will be incontinent for several months. It's definitely a bother, but it certainly beats cancer. I'm trying to figure out how to ride a bike. Maybe the pad will just be a little extra cushioning. Meanwhile, Tom O'Hara has refused to swim behind me. Thanks, Tom.
Barbara had a Moroccan night with her lady friends Esther, Junie, and Donna. Sherri drove Barbara over to Esther's house, and Sherri fit right in, discovering that she and Esther had similar tastes in music. Esther made a wonderful Moroccan chicken, and Junie brought her special soup. Barbara always has fun with her Kuchen Klatsch (my term).
Meanwhile, I took a motorhome trip alone. I spent two nights at the Colorado River with Brent and Michelle - this was their first chance to try out their new motorhome. Brent's brother and his wife Ellen brought their motorhome and their boat. On Saturday, we went out on Lake Mojave in the boat. After an hour of fun, the boat came to an abrupt stop. The propeller is attached to the shaft with a rubber coupling which is designed to break if the propeller hits something like a rock. The idea is to break the cheap coupling instead of the transmission. Well, without hitting anything, the coupling broke. I was afraid that we would need to be towed the 10 miles back to Katherine's Landing. But Brent (who used to own a service station) and Craig went to work. Luckily, Craig had a used coupling and some tools. The two wizards got the propeller reattached, and Craig tried it out. He quickly found that it would slip if he did anything faster than an idle. So, it took us two hours to putt-putt back to civilization. We still had fun, relaxing and eating lunch along the way. I suspect that the other boaters who sped past us wondered what we were up to, but I found the slow sailing delightful.
After two nights at the river, I drove to Arizona to visit Jaedon and Sandra. Jaedon didn't know that I was coming, and he went ballistic when he saw me. We all had dinner together, and then I kept Jaedon with me for the night. We had fun playing Bingo, BrainQuest, and listening to music on my iPod. I have a selection of Jaedon's music on the iPod, but he prefers to listen to my oldies, like "Lollypop" and "Itsy Bitsy Teeny Wienie Yellow Polka Dot Bikini." I let him stay up until his eyes fell and he crashed into bed (around 9:30).
The next morning I made him breakfast, including a bagel cut in the weirdest pattern that I can imagine - he loves it. We went for a swim in the RV Park's pool. He introduced us to a nice lady in her 50's who was sunning by the pool. He said, "This is my Papa from California, and he is NOT single!" What a scream! Jaedon never ceases to surprise me. We all had a good laugh.
We had lunch with Sandra, and I again brought him back with me for a second night. He had a long, animated phone conversation with Barbara.
The next morning he did a bit of climbing on the motorhome, and surveying the territory from "up top." Then we returned to Sandra, and I left for home. He and I both shed a tear, and I promised to visit again soon. So much in Jaedon's life is always changing, and I hope to bring some stability into his life.
Yesterday, Barbara had her PET scan. It requires that she lie with her hands above her head for 30 minutes. It is quite painful, and it even hurts to return them to her side. She went through a pain attack before the scan, and had another attack on the way home. We were very glad to get home. We will learn the results of the scan when we see Dr. Lenz on Monday.
Barbara and I participated in the American Cancer society's Relay for Life here in Glendale. For the first time, I was a cancer survivor, rather than a caregiver. Here we are ready to start the Survivor's Lap. A volunteer gives Barbara her medal and goodie bag, and Booth displays his participant's medal. We enjoyed being a part of the event, but we found ourselves reminiscing about past Relays for Life when Barbara's chemo buddy Bob Gardner and his wife Christina organized a team for the event. It's the people who make the event.
Monday, we talked with Dr. Lenz. Barbara's CA19-9 level is 114, up from 95. Lenz reported that the PET scan was completely normal. He was a little abrasive with Barbara, and she took it badly. His humor is sometimes a little harsh. After he left, she broke down crying, partly from his manner, and partly from relief that the PET scan results were good.
Later, Barbara studied the PET scan written report. Indeed the liver looks normal. Unfortunately, there are multiple areas of the lungs which show abnormal uptake. Specifically, it recommended that "MAC" must be ruled out. MAC is Mycobacterium Avium Complex, which is related to the tuberculosis bacteria but is not contagious. MAC is usually associated with bronchiectasis, but Barbara doesn't have this. It's a bit confusing. Suffice it to say, there are still some troubling signs. With the rise in CA19-9, something is going on.
Today we saw Dr. Selby, Barbara's surgeon. Dr. Lenz wanted to get Selby's opinion about the lung spots which are visible in the PET scan. Dr. Selby feels that cancer in the lung must be ruled out, especially given the rise in the CA19-9 level. He referred Barbara to a cardiothoracic surgeon for a possible biopsy, which would be done through the chest with a long needle. Selby studied the PET scan and agreed that the liver shows no sign of cancer [hip, hip, hurray!].
The discussion then turned to Barbara's frequent, intense pain. Selby stated that very frequently his surgery patients take narcotics after the surgery to lessen the pain, and then develop pain in the abdomen because the narcotics slow down the peristaltic action in the bowels. This leads to constipation and bowel blockage, resulting in pain. Barbara has indeed had bowel difficulties periodically. Her PET scan also shows enlarged bile ducts, which could result from the bile ducts backing up due to bowel blockage. Selby feels that we must first rule out any anatomical problem in the intestines, and he referred Barbara to a colorectal expert. He will probably do a procedure where she swallows Barium, and he watches it go through the gut with a fluoroscope. If nothing abnormal shows up, then Barbara should start a gradual program of reducing the pain medicine. It's ironic that the medicine which she takes to reduce the pain may actually be causing the pain.
I spent last weekend up at Stanford for my 45th reunion. It was fun being with my fraternity brothers and other classmates, and attending seminars and lectures by some of my favorite professors. The time apart was good for both Barbara and me, although Barbara doesn't sleep well when I'm away.
On Thursday, we saw Dr. Nemat in Pain Management. As expected, he was not happy that Dr. Selby's suggestion that Barbara's pain may be caused by her pain medicine. Nemat agreed that narcotics may slow down the bowel action, and a bowel blockage would be painful. But Barbara has no blockage, and only rarely constipation. So, the symptoms don't point to Selby's diagnosis. For now, it's business as usual, and we picked up more of Barbara's pain medicines on the way home.
Now that Barbara has had time to digest Selby's comments, she has some questions in her mind. About 5 years ago, she went to Selby with the same symptoms as she has now: rising CA19-9, spots in her lungs, and pain in her abdomen. He recommended immediately restarting chemo. This time, however, he made no mention of chemo, but focused on the pain medicines. Barbara wonders, "Why the difference?" The only similarity is that Selby again referred her to a thoracic surgeon for the lung spots. I almost think that we should meet with Selby again to discuss these issues. We didn't challenge him at the time, since we were stunned with his diagnosis.
Saturday, we had Barbara's nephew Curtis and his wife Lena and son Antonio for a visit. We had a great time, catching up on family news. Curtis and Antonio had traveled to Virginia to visit Jane, and Antonio got to go fishing in the Chesapeake Bay. Meanwhile, Lena volunteered for wilderness work in Acadia National Park in Maine.
Although the day was chilly, the pool was warm and we played in the pool for quite a while. Later, Michelle, Brent, Jessie, and Kanan arrived. The two boys went back into the water, while Lena, Michelle, and Brent watched on. Jessie was not about to ruin her makeup!
Antonio is very interested in space and astronomy. He was ecstatic when I got out my old telescope. We trained it on Jupiter, and he saw the moons. When I mentioned that no one can see the moons with the "naked eye", he wanted an explanation of this term "naked eye." Eight year old boys have a fixation on certain words, and "naked" is one of them.
We saw Dr. Kaiser, a gastrointestinal specialist at Norris. He suggested that the abdominal pain may be a result of the surgery. As he put it, removing a lobe of the liver leaves a big hole. The intestines can migrate into the hole, and form a tight loop, causing pain when food traverses the loop. He believes that an MRI would be appropriate to see if his theory is correct. He will contact both Dr. Lenz and Dr. Selby, and discuss this plan. He was indeed concerned about Barbara's rising CA19-9, but couldn't know what is causing it. Noting the lung spots in the cat scan, he agreed with Dr. Selby's recommendation that Barbara see the Thoracic specialist, Dr. Hagen.
We participated in a rally thanking our Congressional representative Adam Schiff, for his support of health care reform. It's amazing how many people honked their support. Only three pedestrians expressed opposition. Here is the motley crew.
This weekend we took the motorhome to Dockweiler Beach RV Park. It sits underneath the LAX departure route, and I love to listen to the planes talk with the controllers. We just "kicked back" for the whole time, a much-needed rest. Our departure for the trip was delayed when the motorhome wouldn't start. I had it towed to Certified Automotive in Glendora, where Cherry works and Nu (Gene) Morrill is the owner. They are like family to us since Barbara dated their father for several years BB (before Booth). I'm sure that Nu gave us priority, since it was ready the next day, even though the fuel pump inside the fuel tank had failed and the tank had to be removed. It's comforting to know a trustworthy place to have one's "baby" fixed.
For the Thanksgiving holiday, Barbara, Sherri, and I took the motorhome to Arizona to be with Jaedon. The traffic was horrible, and we were glad that we planned an overnight stay in Blythe both going and coming. Before Jaedon arrived, we enjoyed Thanksgiving dinner prepared by Barbara.
Our time with Jaedon was alternately good and bad. His bipolar tendencies were clearly evident. He and I had a great bike ride (4 miles) around the huge RV park. But when he came to a stop at the end of the ride, and lost control of the bike (he jumped off and didn't even lose his footing), he started yelling that he wanted to throw the bike away.
We hope that our visit helped him. We played games in the RV, he and I went swimming, and Auntie Sherri read with him. He and I had some snuggling time in the morning (my pillow is the planet Uranus, which Jaedon sewed by himself). Sherri let him model her glasses, and showered him with gifts and a hat, Later she took him to the gym, but he didn't want to stay. Last time I was with him, he wanted to play in the gym for an hour. I think that the difference is that I placed the focus on him, whereas Sherri was in the gym for a workout for herself.
We probably won't make another trip to Arizona soon. Before long, Sandra and Jaedon may move to Colorado to be with her new husband Josh.
As we left Casa Grande, we stopped and visited Lainy, who is a moderator of a cholangiocarcinoma chat site on the web. Barbara has always been impressed by Lainy's postings, and this was a good chance for the two to meet. Lainy's husband Teddy has Barbara's disease, except that it started in the bile ducts outside the liver, whereas Barbara's started in the bile ducts inside the liver. The surgeries are quite different for the two versions. Teddy and Lainy are delightful and attractive people, both looking younger than their ages. Their home was immaculate with stylish furniture that excited Sherri. But most of all, they were fun to talk with. After what Lainy calls "An Organ Recital" (where they compare cancer in various organs), we had a wide-ranging conversation. The time went by fast, and before we knew it, we had to leave to drive to Blythe. I'm sure that Barbara will especially enjoy exchanges on the web with Lainy, having had this personal contact.
Monday, we saw Dr. Lenz. Barbara's CA19-9 tumor marker has risen to 128, which is not good. Lenz was as baffled as we are by Dr. Selby's suggestion that Barbara's pain comes from a bowel blockage. He listened to Barbara's bowel sounds, and said that there is no way she can have a blockage with all that activity going on. Lenz did agree with Dr. Kaiser that an MRI would be appropriate. It might show the cause of all of the pain, especially if it's due to a kink in the intestines. We have scheduled a PET/CAT scan on December 8 and the MRI soon thereafter.
Barbara continues to have several pain attacks every day. They are very intense, and it takes up to an hour for the pain medicine to do its job. She spends so much time with a heating pad on her abdomen that the skin looks red. Dr. Lenz asked about it, and was relieved to learn that it was just irritation from the heat.
Barbara met for lunch with Christina Gardner. We originally met Christina when her husband Bob was going through chemo at the same time as Barbara. Bob was a man of many talents, one of which was an outstanding artistic ability, along with a sense of people. One of his wonderful creations is this drawing of Dr. Lenz which captures much of the spirit of Dr. Lenz. The drawing was done on the back of a manila folder (the only medium available in the Day Hospital). Barbara enlisted the aid of Dina Fitzgerald, wife of our nephew Scott, to produce T-shirts with the drawing. At lunch, Barbara presented Christina with T-shirts for her and her two sons. She was delighted. The two ladies had an enjoyable time at Portos Bakery here in Glendale - Portos is well known, but Barbara had never been there. Leave it to Christina, who lives in Montebello, to know the best place to eat in OUR hometown.
On Sunday, we participated in a 5K run/walk benefit for Pain Management. Pamela was one of the race organizers, and Barbara showed her support by signing up most of our family: Brent, Michelle, Jessie, Sherri, and us (Kanan had run a 10K the day before). During the race, Michelle and Barbara stayed together, as did Brent and Sherri, and Jessie and I were a pair. With her long legs, Barbara beat Jessie and me by over 10 minutes. Barbara was awarded third place in her age group.
Barbara has had a zillion medical appointments over the last week. First, she met with Dr. Nemat of Pain Management. She will continue the present course of pain control with Oxycontin, Fentora, and Actiq.
Monday, she had an MRI, as ordered by Dr. Kaiser, to see if it would reveal what is causing her pain. The results show no abnormality in her abdomen, but did show a distended right atrial chamber in her heart - something new to us, but unrelated to the reason for the MRI.
Wednesday, she had a PET/CT scan. The scans showed some new spots in the lungs, and the old spots are more active. The analysis still claims that they appear to be inflammation, but we worry. Next week Barbara will see Dr. Hagen, a lung surgeon, to see what he feels about the scans. He might want to do a needle biopsy of one of the irregularities to see what it is.
Thursday, Barbara had a colonoscopy. As usual, the prep is worse than the procedure. She spent most of the night making trips to the bathroom. Shortly before the procedure, she had an appointment with Dr. Lenz - talk about overloading the day's schedule! Dr. Lenz was more cordial than usual, admitting that the CA19-9 is a cause for worry. He doesn't feel that the spots in the lungs are cancer. He is still adamant that she is not a candidate for chemo. Since the CA19-9 is the only indication of disease, he cannot expose her to all of the chemo side effects, including destruction of bone marrow and bleeding. He ordered an echocardiogram because of the MRI results.
Later on Thursday, Barbara had her colonoscopy. She was in severe pain while waiting for the procedure. We had expected the pain, since bowel action often causes the pain, and the colonoscopy prep causes extreme bowel action. The procedure went well, even though they needed to use twice the normal anesthetic due to Barbara's body being used to pain medicine. Dr. Laine told me that he found nothing unusual, just some diverticula, which we already knew about. He found no polyps, no cancer, and no unusual bends or twists in the colon (which could have explained her pain). She took an hour to recover enough for me to drive her home, and then she slept for three hours.
As I said, this was one stressful week! today, Barbara and I are decompressing at home, watching the lovely rain come down.
Click here for newer reports or Click here for previous reports