I've been bad about updating the blog mostly because I'm not super happy with Google blog. It doesn't always allow people to comment and it's inconsistent in how it notifies people of updates. Therefore, it doesn't seem as convenient or as useful as it was when we first started on this health adventure. I'm going to switch Scott's updates over to email. If you would like to be included in email updates, send me an email at pamela.j.reeder@gmail.com. Scott's email address is onion4abeggar@gmail.com.

Thank you all for the support. We are so grateful for every day.

Happy to report that the MRI showed no pituitary tumor.

This is Scott having a blast in 18-inch surf on a G-Mat crafted by Graeme Webster.

Another long break between updates, but no news is good news. Yesterday, Scott had an MRI of his head to rule out any pituitary tumors. We should get the results tomorrow.

Scott has really enjoyed getting back to normal life. Recently we were reflecting on all we've been through over the last eight months and he said, "I'm just so grateful right now. I just did not imagine eight months ago that I would be doing what I'm doing today." And he's been doing a lot. He's back to working part-time, gardening full-time and surfing a ton. We also just had a super-fun spring break with Scott's sister and our nephew. Addison likes to go, go, go so we went, went, went to the beach, hiking and to SeaWorld.

Scott was also interviewed recently for a great UK-based surf website (www.ukmatsurfers.com). During his chemo and post-surgery fog, Scott said it was hard to imagine being able to write again. But he got a great opportunity to express himself through this interview. He did most of it in waiting rooms, and as you'll see by the length of the piece, we did a lot of waitin'. California surf legend/scribe Ken McKnight nicely captures Scott in his intro. We are so grateful to Ken and hilarious Englishman/mat maker Graeme Webster, who runs the site. Scott also wants to thank cinematographer Tim Ciasto for sharing his talents (and the wave featured in the video short!)

Here's the link:

www.ukmatsurfers.com/scott-reeder/

Ken McKnight in the sweet spot — and aiming for Peter St. Pierre!

We saw our oncologist at Cedars today and discussed the options of surgery of the pancreas and radiation of the chest. After looking at all the reports, he looked up and said "Here's what I think you should do ... Go live your life, work, surf." Since the radiation is not likely to offer much benefit and has the potential of causing great harm, he wants us to skip it. He also does not believe the surgery on the pancreas is the best choice right now. 

His plan is to have Scott continue the monthly Sandostatin injections, which help to keep these types of tumors from growing. To monitor tumor growth Scott will have a CT scan of the chest and an MRI of his abdomen every three months. He will also have an MRI of the brain in the next couple of weeks to rule out any pituitary tumors. 

If the tumors grow, then the oncologist would like for Scott to get a targeted radiation treatment only available in Europe and Houston, Texas. This treatment is only offered through clinical trials in the U.S. and is quite costly, so it is our hope that Scott can do well on the Sandostatin. When the treatment wins FDA approval it will be covered by insurance. That's a bridge to cross in the future. 

We are so happy to have a break from treatments and surgeries. Scott is enjoying being back at work, surfing, gardening and chasing after the little boy.

We had a consultation with a surgeon yesterday. Scott has two small tumors in the pancreas. The surgeon thinks he can remove both of them by removing about 3/4 of Scott's pancreas. The tumors are not in the head of the pancreas, which is a more difficult surgery. Since the pancreas is responsible for insulin production, the surgeon said there would be a chance that Scott would become diabetic. But he said there was an 80 percent chance that what is left of the pancreas would do the job of insulin production. But he also said there's a very high probability that another tumor would grow in what's left of the pancreas. Another difficult decision. We are waiting to talk to the oncologist at Cedars next Wednesday before deciding what to do.

This morning Scott had an internal ultrasound of his pancreas that revealed more about the newest tumor. It's small (1.5 cm x 1 cm) and right in the middle of the pancreas. The gastrointestinal doctor who did the procedure seems to think it's in a good location for surgery. We will see the surgeon Thursday to find out more.

Last week we met with the radiation oncologist. We discussed the possibility of radiating what's left of the tumor in Scott's chest. This will be a difficult decision as it is not expected to be curative and the risks are pretty great. The surgery was risky, but not doing the surgery was even riskier. So it was an easy decision. To have any benefit, the doses of radiation would have to be very high. And doing radiation so close to the heart can lead to really undesirable consequences such as heart attack or heart failure. So we have a big decision to make.

Before any plans are put in place regarding surgery or radiation we will see the Cedars Sinai oncologist. We have an appointment next week.

Since it's Lent, we have embraced an attitude of "giving up" worry. While it's not terribly easy to do this, we're also tired of living life under a constant threat of cancer and of what is to come. We're moving on with our lives and dealing with the cancer as we must. We're making plans again and looking forward to some upcoming weekend trips out of town and a spring break visit from Scott's sister and our nephew. We're also enjoying the warm, beautiful days of late. Well, Scott is enjoying the beautiful days. I'm mostly just sweating a lot while I sledgehammer the back patio. Scott has decided that now is a good time to take out the old concrete. He tried sledgehammering it himself (not a good idea after getting his chest opened up), then declared it seemed more like "women's work" and handed the heavy instrument to me. It turns out that hitting concrete over and over is pretty therapeutic. It sure is good to be alive!

We had such a nice day today. Scott got in the water again. I loved watching him enjoy himself. We're hoping that the next round of treatments (surgery, radiation, etc.) won't keep him out of the water too much. Six months without his daily salt-water baptism is a long time for a dedicated ocean lover.

I will continue to post updates here as we hear news regarding another surgery, etc. We hope to learn more next week.

We saw Scott's oncologist on Wednesday and got the results of the fancy scan Scott had at UCLA last week. This scan is the best technology for detecting neuroendocrine cancers and is only available at four hospitals in the U.S. The scan revealed the small amount left in his chest and unfortunately revealed a tumor in the pancreas. (This is a neuroendocrine tumor and not the pancreatic cancer that is so aggressive.) We were disappointed by the results but are trying to focus on the positives. The oncologist had told us that it would be likely that other tumors would be discovered, so it's good news that there is only one. It can't be determined immediately if it is another primary tumor or if it is metastasis.

 In the next couple of weeks Scott will have further testing to determine if the tumor is operable. The oncologist believes that it can be cut out, but we need to do more tests before it's determined whether that is the best course. We will also meet with a radiation oncologist to see if radiation is a possibility for the bits of tumor in his chest.

In better news, Scott went surfing twice this week! He had to have a little precancerous thing removed from his forehead today and luckily the doctor doing it was a fellow surfer. He set him up with some extra water proofing of the incision so he can get back in the water in a couple of days instead of a couple of weeks. He did, however, say that he might look as though he was punched in the face. Right now, one eyebrow is higher than the other and he looks perpetually surprised.

We were hoping for a little break but we didn't get it. No use dwelling on that. We plan to just do what has to be done and to make sure to take time to enjoy hiking, surfing and hanging with the little guy.

It's been almost a month since I posted. In this case, no news is good news. Scott has been recovering well. On Friday he was cleared by the surgeon to go surfing again. In fact, he pretty much ordered him to get back in the ocean and enjoy life!

Next week Scott will return to work. We had a fancy PET scan at UCLA last week and we expect to get results this Wednesday. With those scan results in hand, our oncologist will help us come up with a treatment game plan.

Scott plans to tackle the surf sometime this week. Today, he tackled Mt. Woodson!

Mt. Woodson with Eric and Monica.

Scott took this picture of me. 

It's Scott's birthday today and while number 43 would not normally be considered a monumental number, Scott's feeling pretty stoked to be celebrating this year.

This Friday, Jan. 17, at 6 p.m., we're going to order pizza from Scott's favorite pizza place and throw back a beer. If you read this blog and pizza tastes good to you, feel free to come on by for a slice. If you need our address, email me at pamela.j.reeder@gmail.com. Feel free to bring the kids!

(Please no presents -- just your smiling faces and empty stomachs).

We saw the surgeon Friday and the exam room was full of white coats with big smiles. All the doctors are really happy with Scott's post-surgical progress, which pleases us a great deal, too. He's getting a lot of walking exercise and even clocked six miles one day. He's very motivated to do well — such a good patient.

We also saw the oncologist at Cedars on Monday. We discussed a lot of different options and have come up with a plan. In February, Scott will have a Gallium 68 PET/CT scan at UCLA (it's only available at four places in the U.S.). The Gallium 68 scan is the best technology available to detect tumors and metastasis. Scott's previous scans showed only regional metastasis, but the Gallium scan is better. If the scan only shows the little bit we know is left in his chest, then we may elect to do radiation to that area. We will not likely do any more chemotherapy as it is not very effective. Radiation is known to be pretty ineffective itself but the benefits of both chemo and radiation may not be easily measurably apparent. Other people who have had this type of cancer and who have had radiation and chemo have had a longer survivability than those who did not do radiation and chemo. This, however, is not great science. A randomized controlled trial using chemo and radiation would be best, but unfortunately, that is impossible with such a rare cancer. There just aren't enough subjects.

If the scan comes back with what we are expecting (that little hunk of tumor in his chest) then beyond possibly radiating that little piece, Scott will continue to get octreotide injections to try to keep the tumor from growing. Our oncologist at Cedars then suggests CT scans of the chest and MRIs of the abdomen every three months. If growth is detected in the coming months, years then we can think about doing a therapy called PRRT (peptide receptor radionuclide therapy). In other words, radioactive medication that goes right to the site of the tumor and binds with it. This medication is currently in a phase 3 trial at Cedars-Sinai but Scott is not a candidate. Only those with intestinal carcinoids are being included in the Cedars trial. But it's available in Europe and in Houston (for a hefty price). Our hope is that he will do well on the regular octreotide injections and then when/if he needs the PRRT, hopefully it will be more widely available in the U.S. Our doctor at Cedars thinks this is a good plan.

Sorry for all the mumbo jumbo details, but some people have asked me very specific questions, so I thought I'd try to break it all down. One thing to remember and to not lose sight of: SCOTT HAD A SUCCESSFUL SURGERY!!!! This alone has added many years to his life. Beyond that, it's important to remember that this is a chronic illness, not a death sentence. Much like other chronic illnesses (like diabetes for example), it must be managed. Scott is strong and has a great attitude. We will continue to fight this thing and will continue to look for the best therapies and best treatment options for both quality and longevity of life. And to quote Dr. Wolin again, "You don't have one foot in the grave and one on a banana peel." 2014 is going to be a great year for L-I-V-I-N!

Happy New Year! We are feeling pretty hopeful about 2014 and have enjoyed a lot of mellow at-home time over the last couple of days. Scott has been getting out for good, long walks every day, and yesterday, New Year's Day, we ventured down to the beach for the first time since the surgery. It was so nice to let the dog run and Scott, too. Well, not run, but walk and talk to friends we ran into there.

We will see the surgeon tomorrow for a follow-up visit. And on Monday, Jan. 6, we will see the oncologist. Hopefully we will find out what's next regarding treatment for that last 5 percent. Scott's had a hoarse voice since the surgery, so we will also schedule a visit with an ear, nose and throat doctor later this month (there are some last bits of tumor around the laryngeal nerve). But his voice is slowly getting better.

Below are some pictures from the beach and some taken at home over the last couple of days.

Casey is stoked!

Maz digs low tide.

Enjoying a little tidepooling with Casey.

So fun to run into Scott's buddy Lisa, who was enjoying the low tide after a surf.

Us (and Casey)

Got this picture of Scott and his friends making their way around the point.

Such a nice visit with Ion and Yvette. Casey action shot.

Scott with our good buddies Ashley and Rob.

Maz and Vincent took a reluctant break from playing to pose for a picture.