Today, Elton and Mari went to see the Jungle Book movie. They loved the graphics, but thought it was very violent and not for kids. Tomorrow, there's plans to go bowling. Don will stay home and work.
On the health front, we don't expect to hear any news from CT scan until sometime this week. Meanwhile, Elton starts the third round of chemo on Wednesday, so he's trying to enjoy the next few days of feeling good.
Sweeping off the roof to keep the gutters clean. Yes, he did the top story too.
Lunch with Mari, DeeDee, and friends.
Elton and Mari both love shopping, so they've spent the last two days running around. Elton helped pick out a dress and shoes for Mari for when she goes back home and has a hot date. Elton found some shoes that I like at DSW, so we made a second trip there this evening to buy them. Otherwise, we're just hanging out around the house with the dogs.
This evening, Elton has been plugging away on his curtains project. He's getting close to sewing in the lining. Maybe tomorrow.
Drapes take up a lot of space.
We've been getting some very nice gifts, though, don't take this as encouragement. Elton got a very nice edible arrangement of fruit from Liz and Butch. Rosana, Pete, and Blue sent a very nice aromatic wreath made from lavender and rosemary. Our house smells very nice. We appreciate this kind and thoughtful gifts.
Edible arrangement from Liz and Butch.
Lavender and rosemary wreath from Rosana, Pete, and Blue.
He went in for some routine labs today and met me for breakfast. I was at work the rest of the day. When I got home, he had gone shopping and made a big batch of spaghetti. Nice.
Very nice flowers from Amy and Than. Thanks!
He had a nice visit from a friend, Kathy, who loaned us movies to watch. Later, he went with our neighbor Lindsay to Costco for a shopping run. He went pretty hard the whole day without a nap, much to my consternation. Let's hope he's not worn out tomorrow.
This morning, we had our monthly neighbor brunch with Tim and Lindsay, our next door neighbors. We couldn't ask for better folks to live next to us and we have become close friends over the years. In a dose of being extra nice, Lindsay asked Gloria and Gregg over too, along with a couple others. We had a lovely time with great food and fun company.
After a little nap, Elton wanted to get out of the house. We took the dogs to Town Lake (now called Lady Bird Lake). We hung out near the old Seaholm Power plant and marveled at how that area of Austin has changed. The dogs also enjoyed getting out and sniffing out the city.
The plans for tonight are to hang out and watch TV. Just a nice Sunday, overall.
Lindsay and her awseome Italian breakfast pie.
The normally bustling chemo center is closed today. A day after his last infuion, he is scheduled to get a shot of an immune system boosting drug called Neulasta. To make sure he got his shot, they put a fancy, almost robotic, device on him to give him an injection 27 hours after it was applied. The device just did its thing and we took it off. It's a timer, a pump, a blnky light, and a bunch of adhesive. I wonder what it costs -- certainly more than a basic hypo.
Elton's delayed shot device.
He was hungry when we left so he ate a bit. After napping a bit more, he was hungry again, so he ate a real dinner. Later, some pie. I'm thrilled he's eating. This time last iteration, he was really fighting the nausea.
He even had a short burst of energy and did some vacuuming. I suspect his energy will continue to be bursy, improving as time goes on. Overall, he's doing well, given the cirumstances.
Elton taking a nap on the couch with Jackson keeping an eye on him.
The visit with the doctor was positive. He saw several signs of improvement including reduced pain in his rectum, reduced swelling in the liver, better liver enzymes, and much improved white blood cell counts. We were encouraged to stay the course and he gave Elton some strategies on dealing with various symptoms.
As I write this, Elton has been home a couple of hours (feeling good) and he's trying to keep up with all the people texting him. He appreciates the support. We hope everyone will get the status update from this blog and focus on more interesting topics with your personal communications. I don't see how he keeps up with all the conversations.
Tomorrow will be a shorter day of chemo and he's likely to start feeling worse-er as the chemo starts to kick in.
Superman getting his infusion.
Lois and Stan treated us to dinner, though we were just happy to have their company. Afterwards, we went to the store to stock up on post-chemo supplies and other groceries.
Since his Aunt Joan is in town for the week, we (Elton, Gloria, Gregg, and I) took her to the Oasis for mexican food, margaritas, and a sunset over Lake Travis. The restaurant has gotten a bit overwrought with odd art. The food has improved, so that makes up for it. The sunset was great over a full(!) Lake Austin.
Joan, Elton, and Gloria at the Oasis Restaurant.
Craig and Roger came by for a nice visit. Craig brought a nice gift! It's a Superman onesie, complete with a cape. He looks just super in it! He even already had Superman socks and bright red "zoom zoom" shoes, so he's all set for his next chemo.
Elton's new onesie.
Later, we went shopping for a new leaf blower. I swear that shopping is his favorite activity. It was nice to get out of the house and do some normal chores.
In the afternoon an old friend and former neighbor dropped by with his mom, who, like so many others, had a cancer story of her own. Many people who seem vulnerable are able to find a lot of inner strength to go through these trials.
We spent late afternoon doing yard work -- mostly getting up the spring leaves from the oak trees and mowing weeds. Our awesome next door neighbor brought over a package of "Stupid Cancer" elastic bands. That was a really nice gift. If you want one, just ask.
After wearing ourselves out, we went out to dinner. Elton announced he was back to his pre-cancer weight. He sure has been eating a lot lately, but that's all good. I told him he's eating for two.
There's that sexy bald man.
Stupid Cancer. My sentiments, exactly.
He's better rested today. He spent some time reviewing his original CT scan with the family. It takes a trained eye to see what's going on. The human body is an amazing machine. Unfortunatly, there are a lot of not-so-small spots on his liver. The other tumors are harder to see in the scans with my untrained eyes.
Elton likes CTCA. A big part of that is that they have been attentive and communicative with him about his situation and his options. He's seriously thinking about going back there for more treatment. Meanwhile, his oncologist here is too busy to return a call. He doesn't plan to change his chemo regimen, so we're still keeping up the good fight there.
On the trip, he started losing his body hair, but tonight, the hair on his head started to fall out. It hit him a bit emotionally. When you see him next, he'll likely be a sexy bald guy.
Today, Elton did a CT scan at CTCA, but the results didn't seem show any dramatic change. His Aunt Joan is in town amd she, Elton's mom, and Elton's brother Gregg dropped by with some great banana bread. They came too early to catch Elton, whose flight was delayed due to a general air travel slowdown due to storms. He arrived home in one piece. The dogs and I went to pick him up. He went to bed soon after getting home. Travel is hard work.
He had a full day of getting poked and prodded at CTCA today. The shot to boost his immune system seems to be doing the trick. He's tired from the visit and ready to come home, I think. When I talked to him last he was back in the hotel figuring out a dinner option.
CTCA seems to be a place where the err on the side of doing too much. They offered him surgery and radiation options, when our doctor here explained that spreading cancers aren't really treated that way. One can imagine having a surgery one week only to find out there's a new tumor somewhere else. Seems like whack-a-mole.
I've been carping at him a bit because I don't really understand what it means to have treatment in Atlanta when everything is here. He may not be well enough to travel at some point. Does that mean living there? At what financial and emotional cost? He's been too tired to debate, so I'm a little out of the loop today.
Tomorrow, he's getting another CT scan there, whereas the doctor here was going to wait until after the second chemo had taken an effect. Getting the scan is "doing something", but I expect the results will be ambiguous. It's just too early, in my non-medical opinion.
He comes home late tomorrow.
He got to see his CT scans for the first time. Our oncologist soft-pedaled it a bit on the original post-scan visit. He has 4 small spots in his lungs, 9-11 in his liver (larger), and two clumps near his rectum (the original site). I've heard that these more aggressive tumors are also the ones that respond best to chemo, so perhaps the doctor didn't want to alarm us. It is disconcerting, though.
This has been a bit of a wake-up call, that he really is compromised dispite his reasonably good energy level. I'm axious to get him back home where we can do more for him. He indends to wear a mask when he's in public for the rest of the trip. He's coming home Thursday.
Taking the bus back to the hotel.
High time for another update. We had a weekend of chores and computer repairs, but nothing terribly interesting to report.
Today, Elton got up early and went to the gym. He did a partial workout and got to visit with some of his friends there. After breakfast together, he resued me by bringing my phone to me at work. I had accidentally left it at home this morning.
He left for Atlanta this evening and is safe in his hotel as I write this note. He's visiting CTCA as I mentioned in an earlier post. He has about 2 and a half days there, so it'll be interesting to see what he learns. He returns Thursday.
Quiet day today with not much to report. We went to see the movie "London has Fallen". It was a pretty good action movie.
Elton is having a bit of pain in the area where his original tumor is. We're hoping it's the chemo beating up on it.
This morning, Elton went in for a blood draw to check the impact of the chemo on his body. Those results were pretty much as expected. We forgot, though, that they were also going also do an infusion of saline to help him stay hydrated, though it seemed to be optional. They need the port for an infusion. But, we forgot to prep it with a numbing agent, so the stick today was a bit painful.
Elton's feeling good, overall and largely back to his normal activities. He's been getting stronger and gaining weight for his next dose of chemo on the 30th.
While we trust the oncologist, Elton has long wanted a second opinion. He's been trying to get the attention of a specialist--preferably at M. D. Anderson Cancer Center. They called back today and said that since he had started a course of treatment, they didn't want to see him. That was a disappointment, but understandable as they have to find a way to cope with the tidal wave of patients they get.
I also found out yesterday that Elton had been working with the Cancer Treatment Centers of America (CTCA) to try to learn more about his situation that way. They have offered to fly him out and put him up for an initial visit at their expense. He has decided to go next week to Atlanta for this visit. He'll be traveling alone. He's strong enough to do that and I understand the desire to explore all options. We'll see how "free" this first consultation turns out to be.
CTCA seems to be a cancer treatment spa that offers a holistic approach, which might include things like acupuncture or chiropractic that are unrelated to the cancer treatment. They are for profit and making great money, so one has to ask how they do it. It seems they cater to rich people who can afford the spa experience. We're not among those, so I don't see the point.
We also talked with Elton's general practitioner today, who was not opposed to CTCA, but thought it was not worth pursuing unless they were going to offer a radically different treatment approach. He said Elton's oncologist is very likely doing the standard treatment for the type of cancer he has and that's not so easy to improve upon.
Elton's port doing its job.
It's almost hard to imagine that Elton has cancer or is taking chemo. He's full of energy. I spent the day in the office and we did our usual breakfast out together prior to going our separate ways this morning. Elton came back home and was busy raking leaves, making a trip to Goodwill, and dealing with some insurance billing snafus. I imagine a nap was in there too, but I didn't hear about it.
He's been eating like a horse and gaining his weight back. As of now, he's only 12 pounds down from his original weight. He thinks this is the weight he should be, so he's not stressed about it and he looks good. At this rate of eating, though, he'll retain most of it back in the next week or so.
Tonight's a normal night, watching TV and hanging with the dogs. Wonderful, mundane, normal life.
Tomorrow, we go in for post-chemo labs (blood draws). It's a routine procedure to make sure the chemo isn't doing more damage than it should be. We may not know results for a while. They go to his oncologist first. The next chamo will be March 30th, when the cycle starts again. For now, things are good and we appreciate all the love and warm wishes from friends and family.
Elton has been up and down today. He's fighting a little infection for which we have antibiotics and Advil. That and some occasional naps seem to be handling it. Last night, Don was banished to the guest bedroom so that Elton didn't have to hear his snoring all night.
We got out and ran some errands including two bank visits and getting some fruit at Costco. This evening, Elton and his brother Gregg power washed and vacuumed the cars. Elton gets his energy spurts at night, it seems.
Elton has been wanting to get a second opinion on his cancer, but it seems to be a challenge. Getting call-backs from M.D. Anderson Cancer center is a challenge. Elton has been considering the Cancer Treatment Centers of America, but his Sherlock Holmes cousin, his Nancy Drew aunt, (and skeptical Don) have expressed concerns about the ethics of their business practices and whether they are really any better than other treatment alternatives.
Don is rebuilding his personal computer after a disk failure, so all spare moments are busy doing something.
Elton is having more and more normal days, in terms of energy and appetite. He made cabbage soup today to satisfy a craving, even going to the store with his mom to get ingredients. He's still needing to rest a bit, but he's getting stronger every day.
Some good news. He went to his proctologist today for a final appointment on some work done earlier. He's the one who discovered the original tumor. He said that he thought the tumor was smaller than before, so maybe the chemo is already starting to work. We're trying not to read too much into this comment as this wasn't from a scan nor is he an oncologist. We are hopeful that this is an early glimmer of good news to come.
Elton made cabbage soup. Yum!
Beautiful flowers from Mari. Thanks!
Elton was a bit tired an nauseous today, but nothing too serious. By dinner time, we went to P-Terry's to get chicken sandwiches.
Our enterprising neighbor set up a calendar on LotsAHelpingHands.com so that we can more efficiently ask for help. See above for details.
Today was a slow day with Elton enjoying the warm weather outside and a visit from friends. He took a couple of walks with the dogs and we made smoothies with a fancy blender his mamma loaned us. Elton's energy level could be better, but he feels ok.
Chillin' with Jackson on the couch.
Elton's feeling a lot closer to his old self today. Not much nausea or fatigue. He's eating and getting back to normal things like showering and shaving. We had a few visitors today and the sun has been shining.
Don went to a presentation put on by the cancer center for care givers. There was a lot of practical advice and a bit of group therapy. Elton and I have a lot of things going for us that other's don't, so we're again counting our blessings.
Don finally set up the cancer blog, to help spread the word. A lot of people want to keep in touch and this will help, we think.
It's been a busy week Elton had his port device put in with minimal trauma. In his post-operative recovery stupor, the nurse ask who should come to pick him up. He requested President Obama. Elton's brother was on hand to bring him home. Later that day, we had a couple of hours of "Chemo Education", with lots of information about the drugs, what to expect, and how to cope with symptoms. That in itself was a relief as we found out that we'd have good anti-nausea drugs and ready nurses in case of trouble.
Chemo started Wednesday (March 9) with a full day hooked up to the drip. Thursday and Friday (today's) chemo was a shorter 2-hour drip. Elton has been hit by nausea, which we're keeping under control. He's tired and knocked down a bit. Now, we are in the recovery phase for 18 days until the next iteration.
After two full iterations, the scans will all be redone and we'll see what progress the chemo has given us. Until then, we won't have any inkling of a long term prognosis. For those that want to know, he's on cisplatin and etoposide as well as a steroid to help with nausea.
Elton is in good spirits, though the chemo is clearly hard on him.
With Marie at the cancer center getting the second dose of chemo.
Elton hamming it up at his first chemo treatment.
Hello family and friends. Our world was rocked on March 3rd when a colonoscopy biopsy confirmed that Elton has a cancer called neuroendocrine carcinoma. What seemed to be a minor proctological problem was much more serious than we expected. After a first visit to our oncologist, a number of tests were run: a CT scan of his torso, an MRI of his head, and a blood workup. We met again with the oncologist with the results back on March 3rd. Elton's cancer has spread from his original tumor site near his rectum to both his liver and lungs. Thus making it a stage 4 cancer. The doctor described it as "aggressive" and "systemic" and indicated that this would be a difficult fight.
Treatment involves chemo. Because of its spread, radiation and surgery are not likely to be helpful. The doctor thought that he would get at most 6 rounds of chemo; more has not proven to be helpful with other patients. The chemo will be iterations of 3 days of getting the drug via IV and then 3 weeks of recovery. After the second iteration, we will repeat the scans and we'd see where we are. The doctor was optimistic about Elton tolerating the chemo as he's young and strong.
We are still reeling a bit from the news. Elton is a bit under the weather, but not greatly debilitated. It's hard to square that with the serious diagnosis.
We are just at the beginning of treatment. The next step will be the insertion of a port device in his chest that will allow easy blood draws and provide an arterial path for the chemo to be delivered. As of this writing, we still don't know when the first dose will be given. There is a sense of urgency to begin turning the tide and we'll likely start it this week. I'll give updates as to his progress.
Elton has more dear friends than anyone I know. Those whom he's told have been super supportive. We appreciate the well wishes and outpouring of love. We have had large numbers of friends offer whatever time they have and one enterprising friend who has even offered to coordinate volunteers. There may come a point when this is needed, but we're not there yet. We're truly blessed with all this love.
For now, we're enjoying the waning days of normalcy and optimistically bracing for the coming storm. If you'd like to contact Elton, it's ok. Text might be the most preferable way for now. Long phone calls can be difficult. Some quiet time (and nap time) is good for the soul. Visitors are ok, but please don't drop in unless you've called or texted first. Since I know that so many people deeply care about how he's doing, I'll try to keep this blog up to date. Please feel free to share this link with those who know Elton. Keep sending us your prayers and good vibes.