Barbara had her PET scan last week, and she received the results from Taline yesterday. Basically, there is little change. There continues to be some activity in the lungs, but not an alarming amount. The abdomen is unchanged. Her CA19-9 level is also unchanged (in the mid 120's). She sees Dr. Chang today to discuss the lung issues.
We just saw Dr. Chang, the pulmonologist. She read the PET/CT scan herself, and then conferred with the radiologist to draw from him a more definitive diagnosis. We love how proactive she is - she won't take anything at face value without questioning it. The result was a far different interpretation of the PET/CT. There is a significant new spot in Barbara's upper right lobe of her lungs. Dr. Chang showed us the image, and it looked to me like a supernova. Dr. Chang says that it must be addressed - it is either a flare-up of MAI or a tumor. If it is MAI, then an aggressive MAI treatment must be started. If it is a malignant tumor, then Lenz must restart chemo (and the MAI will still need to be treated since it will advance rapidly in the presence of chemo). The spot is unreachable via bronchoscopy, so Dr. Chang recommends a CAT scan guided biopsy. This outpatient procedure will happen in the next two weeks.
Last Thursday, Barbara had an ultrasound of her legs; it showed that the clot is completely gone. Good news indeed! Unfortunately, her blood test showed that a clotting factor (d-dimer) is very high, and she will need to resume the Lovenox injections.
I've suffered a setback - click here. I dropped Barbara off for the ultrasound and parked the car. When walking out of the parking structure, I tripped on a cement bumper, fell onto my hands and knees, and broke my left kneecap. The ambulance took me two blocks to the emergency room, where an XRAY confirmed the break. Since the two halves of the kneecap are still in place, the orthopedic surgeon decided against surgery. Instead, I must wear a brace continuously for a month, except for showers. I am not to bend my knee at all, since that might pull the kneecap apart. It's a nuisance, but thankfully I didn't hit my head or suffer some worse injury. I've gone from the caregiver to the one receiving care. Barbara has to drive me to all of the medical appointments, and care for my needs here at home. Being on crutches, I can't even carry my food to the table. I had to cancel my trip this weekend to Catalina, where I usually provide the computer support for the Avalon 50 Mile Benefit Endurance Run.
We had a nice celebration for Brent's birthday and Sherri's birthday. Barbara made one of her signature dishes: chocolate cheesecake. Everybody loves it, especially me. Here are a few photos:
The rest of the week includes more medical appointments. I have an echo cardiogram - the ER doctors freaked out when I went into atrial flutter. It's nothing new for me, but I'll go along with the echo cardiogram; it's been years since I've had one. Later in the week Barbara returns to Dr. Liebman, to talk about clotting and whether she really needs to be on Lovenox.
From Barbara: "We're just overwhelmed with doctor appointments. All we do is see doctors." I concur.
Barbara showed up Monday for her CAT scan guided biopsy of the spot in her right lung. As they started the CAT scan they saw that the spot was considerable reduced in size. A quick call to Dr. Chang resulted in the procedure being aborted - no sense taking a biopsy of something that is going away. We still have to make a decision on whether to treat the MAI in her lungs.
I saw my orthopedist, and a new XRAY shows that the kneecap is still in place and is healing normally. So, the decision to avoid surgery was a good one. I will be in the leg brace for another three weeks.
We saw Dr Chang, and she urged Barbara to start the MAI drugs. So Barbara grudgingly started them two weeks ago. They are causing stomach pains and some nausea, which would be tolerable except that the treatment will last a year or more. We're just taking it a day at a time.
Barbara also saw Pain Management. They are delighted that Barbara has reduced the pain medicine by more than half. It's clear that the last surgery solved much of the adhesion problems.
We attended Mary & Robb's fantastic Super Bowl party. Mary is Barbara's long-time buddy - the two girls have run marathons together, and Robb and Mary made it possible for us to become race officials for the Race Across America. We also did an aid station together at Western States 100 mile run for 5 years straight. The party was pot luck, and Barbara brought her wonderful Beckstrom salad and lemon pound cake - Yum! It was a festive time, with big screen TVs, lottery pools, and great camaraderie.
Next week we see Dr. Liebman. Since the blood clot is gone, there should not be any surprises.
We saw Dr Liebman. He wants to keep Barbara on blood thinner, but agreed to switch her from Lovenox, a daily injection, to Xarelto, a tablet. Barbara hated the injections and they often caused bruising. Today, we saw Dr Heger, our cardiologist, and he is strongly approves of the Xarelto.
We spent a night at the Escondido home of Curtis and Lena, and their son Antonio. Barbara's niece Sara was visiting from the East coast with her husband Scott and children Nathan, Abby, and Tommy. It was a delightful time, and we got caught up on all of the family news. Scott treated us all to a delicious dinner at a local Mexican restaurant - enormous meals! Sara's kids are very cute - check out the photos. Curtis and Lena always spoil us with their hospitality. We truly enjoy being with them. When I sat with Antonio in the car, he asked questions about nuclear propulsion - what a smart kid! He had read about nuclear propulsion in National Geographic magazine. It pays to have no television in the home. I want to bring my telescope next time, since Antonio is excited about all science.
Barbara's nephew Scott stayed with us for a night. He was enroute from Fort Huachuca in Arizona, to Washington state. He has been promoted to Lieutenant Colonel, and will be assuming a command. He invited us to the installation ceremony in May. We wouldn't miss it (even though Barbara hates to fly).
We had a fun evening with Michelle, Brent, and Kanan playing Monopoly. Barbara was the tycoon of the evening. It takes a special activity to peel Kanan away from his electronic games and Rubick's Cube. Kanan can be especially fun - when Barbara let some profanity slip during the game, Kanan couldn't contain his amusement. On another occasion, I was telling one of my worn-out stories, and Kanan filled in the "punch line", making it clear that I had told the story too many times. Leave it to Kanan to get me back on track.
Barbara is still enduring the drugs for the MAI lung infection. She has frequent stomach pain. The pain drugs for cancer don't do anything for this type of pain, so she uses a heating pad and waits for the pain to subside.
Barbara had a PET/CT scan. Dr. Lenz reports that it looks improved. Her CA19-9 is also down to 87.4 (from 124). With those two results, her cancer prognosis is good. That doesn't help with the discomfort that she has from the MAI drugs. She continues to have lots of stomach pain, especially after taking the drugs (three times a week). She feels a little down, since the distress keeps her from making some plans. For instance, our nephew Scott is taking a command position in the Army, and the ceremony is later this month in Washington state. Barbara is afraid to be caught in security lines or restricted to her seat on the aircraft when she has a need to visit the bathroom. We still hope to go to the occasion.
The MAI drugs have many side effects. Lenz looked at Barbara's blood tests and ruled out liver damage. But he recommended having her vision checked, which she has scheduled. She also had her hearing tested (and so did I). Her hearing is down a little, but is fairly normal for her age. Mine is even better which is surprising, given my many years of flying without ear protection.
Barbara spent some time in the dentist chair. She had a crown replaced. No fun. But at least Dr. Lad is a wonderful, sensitive dentist. She can relax (sort of) with confidence in his abilities.
Barbara and I drove up to Montecito to visit with her brother Bill, his wife Vicki, and her mother Barbara Netter. We had a nice brunch, and then spent a relaxing time at Barbara Netter's beautiful home in the foothills of Montecito. We had not seen them for some time, and it was fun to catch up on the family news.
Sherri has taken a job at Newport Dunes RV Resort. For my birthday, we spent two relaxing nights at the resort. Sherri, Michelle, and Brent took us to the fancy "A Restaurant", for a wonderful birthday dinner. Great food!
I have had my share of medical procedures. I had a pre-cancerous mole removed from my back. Then, this Wednesday, I had another cardiac ablation. Since I only have atrial flutter, instead of atrial fibrillation, the surgeon predicts a 90 percent chance of success. I sure hope for a cure, since the flutter limits my bicycling - just ask Brent who saw my lackluster performance on Cycle Oregon last September.
In the next weeks Barbara will see our eye doctor and Dr. Chang, the pulmonologist. Not quite like April, when we had one medical appointment after another.
I didn't realize that Barbara was busy with her cellphone snapping funny photos and a movie when I was in the recovery room after my ablation. Warning: the movie is 11 MB, but its audio is pretty funny.
Today we celebrated Mothers' day with Michelle, Brent, Kanan, and Jessie. Yes, Jessie is home from college for the summer. Today we also celebrated Jessie's birthday, making it a double celebration. Barbara made a birthday cake from scratch - Jessie wanted a "white cake", and Barbara had to scour her cookbooks for a recipe for a plain white cake. As always, "Ma" came through.
Earlier in the week we got to see Kanan in his MMA class (Mixed Martial Arts). His instructor used Kanan for several demonstrations. He is becoming very strong and skillful.
Barbara and I flew to Seattle to attend a military ceremony for Barbara's nephew Scott. It was a Change of Command for Scott, who is taking command of the Army's 109th Military Intelligence Battalion. It's a big event, with lots of pomp and formality. It was held outdoors on the grass parade grounds at Fort Lewis. All four companies of Scott's battalion were marching in formation with a live military band. Scott's speech included some touching thoughts about close family members, including crediting Barbara with giving him some ideas about endurance - actually, the truth is probably the other way around: he helped Barbara through her last 50 mile run at Catalina. I was especially impressed reading his bio in the program; he has received many honors during his career, and we can look forward to much success as battalion commander. I took a few photos of the festivities. He wore a beret.
Barbara and I attended the Festival of Life celebration at Norris. We ran into several familiar Norris staff, and we saw several of our fellow patients. The keynote speaker was Dr Hagen, Barbara's surgeon for the VATS lung surgery. He has apparently mellowed somewhat - he was quite different from our last encounters. At the end of the ceremony, they release white doves, and Barbara is reminded of Bob Gardner, with whom she released doves at an American Cancer Society 24 hour run. Bob was a "chemo buddy" and one of our favorite people. He was quite the artist, and Barbara made T-shirts from his cartoon drawing of Dr. Lenz. Fond memories.
Our son-in-law Josh was in a bowling tournament in Reno this week. His family made a nice vacation out of the occasion. They obtained a timeshare condo near South Lake Tahoe and brought the whole family. Josh brought his kids, Nathan, Adriana, and Braxie, our granddaughter. This was a great opportunity to see them without the long trip to Colorado, so Barbara and I rented a condo in the same complex and drove up for two nights. Braxie is changing rapidly. She still loves to play with us, but she is less "Touchy-feely" than before. Maybe it's because of the constant distraction of the other 10 kids. We really enjoyed being with her and Josh. I took some photos:
Barbara has another PET/CT scan. It was again clear in her abdomen. Her lungs are clearing slightly, probably the result of the MAC drugs that she is taking for a whole year. The radiologist did mention that he saw evidence of pulmonary hypertension. Today we met with Dr. Chang, Barbara's pulmonologist. Before talking with us, Dr. Chang conferred with the radiologist about the finding. He looked back on Barbara's earlier scans and found the same indication - so it is unchanged. It was merely not mentioned in the earlier reports. That's a relief, since pulmonary hypertension is serious and tends to get worse over time. Dr. Chang said that a true case of the hypertension would result is difficulty in breathing, and Barbara has no such symptom. Dr. Chang suggested that Barbara get an echo cardiogram, which will give a definitive diagnosis. Barbara sees our cardiologist, Dr. Heger, next month, and she can ask for the test then.
Both Barbara and I have spent some time at our dentist, Dr. Lad. I needed a crown for a broken tooth, and Barbara needed a crown replaced. We found out, to out surprise, that my dental insurance had expired. I knew that I had a limited time after retirement to make other arrangements, but the time passed without any notice. It turns out that dental insurance isn't worth much anyway: it would cost $1500 per year and the maximum payout is $1500. What a crock! So we will self-insure. Dr. Lad said that many of his patients do just that.
Barbara and I spent three nights at YMCA Camp Whittle near Big Bear. Our daughter Michelle is a director there for the week that the South Pasadena YMCA sends kids there. Michelle asked me if I would bring my telescope and give astronomy talks. I had a great time giving the talks, and the kids asked wonderful questions. We had a few shooting stars, which resulted in fun discussions of comets and asteroids. Barbara had fun watching all of the activities and chatting with the kids. We ate several meals with the campers, but we slept in our motorhome - nice and comfy. We hope to return next year and spend the whole week.
Barbara's CA19-9 has continued down. It is now 70.9, so the elevated level is due to the MAI infection, at least partly). If it continues down (normal is 35 and below) we will continue the MAI drugs as before. But if it plateaus, then Dr. Lenz will need to address what else is causing the CA19-9 level to remain high.
Barbara met with Dr. Liebman, her hematologist. He is pleased with her status. Her labs are "champion", with the d-dimer nice and low, meaning that her risk for clotting is low. She shows no signs of edema.
I've been away for a while. My Stanford-in-Germany group had its 50 year reunion in Germany. Of the 80 students from our time in 1963, 29 showed up at the reunion! We spent three nights at the school near Stuttgart (the school is now a hotel). The town treated us like royalty, giving us a briefing by the Bürgermeister (mayor) and his staff. We toured the greatly expanded wine cellars (Remstalkellerei), and had a walking tour of the town, including the twelfth century church. We then flew to Berlin. Many of us had not been to Berlin since the wall came down. I visited several spots that I had seen in 1963 - what a change. Our guide in Berlin was Bob Hamrdla, who was with our group in 1963 and has gone on to lead Stanford groups touring Germany. He put together a jam packed 4 days in Berlin, including a briefing at the US embassy, including the US ambassador. We toured the Chancellery (their White House), the Reichstag, Potsdamer Platz, Unter den Linden, a boat ride down the Spree River, and lots of other attractions. I had a list of things that I wanted to see, but there was little free time. I know that I will return soon to that amazing city.
Three days after returning from Germany, I left for Cycle Oregon, a week long bicycle tour starting in John Day in eastern Oregon. I was not in top bike conditioning, especially given the week off in Germany. But I managed to complete the entire ride without getting any rides in the sag wagon. It was a fun week, and I had lots of interesting conversations with fellow riders at breakfast and dinner.
We have nothing on the schedule for a while. It's a good time to spend some time at the beach with the motorhome.
Barbara and I attended an office open house for our dentist Dr. Lad. We were surprised to find our running buddies Ed and Corinne Imlay at the open house. We didn't realize that Dr. Lad is their dentist also, and they have been going to him longer than we have. It was fun to see them again. It increases our enthusiasm for the upcoming reunion of our Foothill Flyers running club next month.
We saw Taline (Dr. Lenz is out of town), and she reported that Barbara's CA19-9 level has fallen from 70.9 to 55.1. What good news! Apparently the MAC infection was indeed contributing to the elevated CA19-9, as Lenz suspected. Dr. Chang, out pulmonologist, is equally elated. It's a tough course of treatment - 12 months of vile drugs - but we're certainly happy with the result. The lower CA19-9 suggests that the cancer is not advancing (for the time being).
We also saw Barbara's cardiologist Dr. Heger. He assured us that the cat scan indication of pulmonary hypertension was not a definitive diagnosis. For one thing, she has none of the symptoms. He scheduled an echo cardiogram to rule out the ailment.
A few days later, we attended Dr. Heger's art exhibition at his home. We saw his art studio, and enjoyed mixing with his family and friends. It's fun to see the other side of a doctor's life.
We're planning a motorhome trip to the beach soon - it will be nice to get away, just the two of us.
Barbara had a nice lunch date with Christina Gardner, widow of Bob Gardner, who was a "chemo buddy" of Barbara. We spent many hours with them during chemo sessions at Norris, and they introduced us to the American Cancer Society Relay for Life event. To this day, we are still participating in the event. Barbara and Christina met at Porto's Bakery in Glendale, and caught up on all of the family news.
We had a session with Pain Management. Not much to report - Barbara is doing fine on her current dosage, which is much reduced from when she had pain from the adhesions. During the last surgery the adhesions were released, resulting in a big reduction in pain.
We spent four nights in the motorhome at San Elijo State Beach south of Oceanside. It was very relaxing. Barbara finished a book, and I did some astronomy. We walked daily, on the beach and in the community. It's nice to hide from the world and watch the sunset.
Saturday, Barbara did a 5K walk as part of the Turkey Trot run in San Gabriel. Our old running club, the Foothill Flyers, had a reunion after the event and Barbara got to chat with our long-time running buddies. I had to miss the event due to some painful back spasms. Our doctor believes that my tight muscles may be the cause. He suggested more stretching and a massage. Sounds good to me!
We were surprised to get a call from Karl Schick, out ultrarunning buddy who moved to Portland. He was an amazing runner in spite of being heavy, and now he has lost 100 pounds! We sure would like to see him. He and his wife Sylvia, who is from Bavaria, spent some time in Germany. I was in Germany at the same time, but I didn't get to visit the Oktoberfest - I'm jealous.
Barbara is on the home stretch with these lung drugs. She must take them until the end of January. They almost always cause stomach pains, and they distort her taste, preventing her from enjoying her own cooking. It'll be a relief when those drugs are a thing of the past.
We watched Kanan run his first half marathon. The race was on a brutal course in Griffith Park, climbing to the tops of the hills three times - around 4000 feet of altitude gain! Kanan ran very well, with Brent and Michelle running with him to help him keep the pace down in the first part of the race. It worked - Kanan ran a negative split (faster in the second half). He looked tired after the finish, but he recovered quickly. Looks like we have another runner in the family.
Thanksgiving was really nice this year. Michelle and Brent has us up to their "alpine chalet" in Wrightwood. The home has been completely remodeled (after a renter let the water pipes freeze and destroyed the interior of the entire home. Brent cooked the turkey, and Michelle and Barbara added the rest of the dishes. We shared the festivities with Brent's daughter Heather and her husband Jason. Only Jessie and Sherri were missing - Jessie is in Arcata and Sherri has to work on the holiday. We took a few photos:
Yesterday, Barbara and I ran the USC Quench the Fire Run. Barbara race walked the 10K and I strolled the 5k. It was a really cold morning (low 40's) in the Lake Balboa part of Sepulveda Basin. Although we were both slow, we brought home awards: Barbara won first place in her age group, and I got third! It helps being so old that the age group is sparse.
Barbara is counting down the last two months of these vile lung drugs We hope that the stomach pains go away when the meds are discontinued.
Last updated on Monday, 12/09/2013 at 4:00 PM
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