Scott continues to recover well. He is dealing well with the pain and is determined to be a great post-surgical patient. Today, he walked three miles (at different times throughout the day) and remembered to ask for help lifting things, even though it's not always easy to feel helpless. But he seems to not lose sight of the temporary nature of recovery. Each day gets a little easier.

So now that we're out of the hospital, I thought I'd share a few hospital experiences that made us laugh:

After the doctor gave us the good news:
Me: "So was the tumor not very sticky?"
Dr. McKenna: "It was sticky, but I brought my WD-40 and a chisel."

Soon after the doctor walked away after delivering the news:
Stacy: "I need him to say that WHOLE thing over again."

During a drug haze, Scott heard the nurses talking about his SCD (sequential compression device) to reduce the chance of blood clots.
Nurse: "Is there an order for SCDs?"
Scott: "I have an STD?!!?"

Waking up from a drug-induced haze:
Scott: "Where am I?"
Me: "Is that a philosophical question or a location question?"

When I saw him for the first time in recovery, Scott held his hand up in the shape of an L.
Me: "Are you calling me a loser?"
Scott: In a difficult whisper, "Love."
Me: "Oh, that makes more sense. I love you, too."

Walking the hospital halls with Monica and Eric, who were holding hands.
Me: "You and your honey and me and my honey out for a stroll."
Monica: "This is the best double date ever."

When Scott needed some help getting cleaned up:
Me to Eric: "Do you want to give Scott a sponge bath or should I?"

After discharge and arriving at my brother Chris' house:
Chris: "Should I give you a hug or should we just chest bump?"

And, lastly, on the drive up for the surgery:
Me: "Stop farting or I will quit trying to save your life."
Scott: "Sorry. It's the cancer."

This evening we had a visit from our old friend Randy Davidson and his wife, Tina. Scott and Randy were roommates in college. We loved reminiscing about how (after Scott moved out), we would return to where Randy lived and help ourselves to Randy's food when he was at school or work. Our favorite story was when Randy came home from surfing and found us munching on the last of his pancakes. We tried to repay him tonight with some dinner pancakes but he turned us down for tri-tip.

We are home! We were surprised by a welcome-home banner, courtesy of the Remikers.

And today Amy came by with gifts from our ER family. Such a wonderful group of people. We are truly blessed and in awe of their generosity.

Scott gives his heart pillow a squeeze. 

A heart pillow signed by a lot of loving friends at Sharp's ER. Love my job! Love my co-workers!

Such a nice Christmas! Maz had so much fun with his cousins and Scott and I took many short walks around my brother's neighborhood. Such a nice day with the Burbank crew. By the afternoon, Scott and I konked out by the pool. It's been a long couple of months. We head home to San Diego tomorrow.

We're home at the Slaughter cousin abode. So happy to spend Christmas at home. 

We brought Maz his own incentive spirometer. He's stoked that he can get all three balls up and his Dad can only get two. It won't be long before they're tied.

The surgeon took all four chest tubes out this morning. Scott is free to roam about without two large chest tube drainage containers attached to an IV pole. And his pain decreased a lot when the chest tubes came out.

They have given us the choice to go home this evening or to stay another night. He's doing really well so we may opt for this evening. It sure would be nice to spend Christmas with Chris, Marja and Maz's cousins. We will decide over the next couple of hours.

Scott's breathing is better today. He is feeling less short of breath. He is beginning to feel hospital fatigue but he's managing that with many walks. 

We were visited by Cheryl, Rick and Jill. Jill and Rick brought us a delicious supply of cookies and fudge. Jill brought us a homemade ornament for the tree and Cheryl noticed that our tree lacked a topper and made us a pretty little star.

Eric came in the afternoon and beat us both at cribbage. :(

Maz had a really fun day visiting LA sites with Stacy, Dean, Rylan and Barrett. And I stepped out for dinner with Chaana, Noam, and Eric and brought Scott some pizza. Scott's appetite has returned.

We also got approval for Maz on Christmas Day. He can come to the lobby of the 6th floor so that is where we will celebrate Christmas. We are so happy that we will be able to spend Christmas together.

Thanks again for all the visits and nice comments, emails and texts. We really appreciate and cherish all the support.

Scott gets a visit from the Burnhams, my second family growing up.

Cheryl made the star for the tree.

Jill added a homemade ornament.

Maz out on the town with Rylan and Barrett.

At the Hollywood sign.

Another good day. Scott needed another two units of blood but it didn't stop him from strolling the hallways. We enjoyed visits from Chaana and Noam who brought us yummy empanadas, Scott's first bite of real food since the surgery. Monica and Eric entertained us in the afternoon and brought Eric's signature sourdough. 

Strolling the hallway with his lady.

Monica shows off Eric's bread.

Nothing more fun than getting blood and hanging with friends.

Scott is doing well. He's still trying to figure out what meds work best for controlling the pain but not turning him into a complete zombie. He had a little trouble sleeping last night but he's resting now. 

He misses Maz and we still don't know when or if we will get approval for a visit. But Maz is being well taken care of by his aunt and uncle, Marja and Chris. Yesterday, I came home from the hosptial to find everyone in the kitchen making gingerbread houses. 

This morning, I decorated Scott's room with a little Christmas cheer. 

Maz surrounded by Slaughter cousins Daniel, Nicolas and Isabelle.

Scott's Christmas tree.

Scott has been transferred from the ICU. He got two more units of blood today and seems downright perky. We lost our view of the Hollywood sign but it's a good trade off for how he's progressing. 

Monica tries to steal some of Scott's chicken brother. Mo, get your own food.

Scott is getting stronger and stronger. He has already been for two walks this morning. One of those walks consisted of 4 laps around the ICU! 

He will be transferred today to a step down unit. They are moving him off of the patient controlled pain medications in an attempt to wake him up a bit. Right now he is having Garfield-the-cat-like-nap-attacks and constantly looks like he's in a drug-induced stupor. We've had some pretty strange conversations. :)

Here's Scott with today's visitors. I forgot to take a picture of Scott with high school buddy Paul Covington but he lives near by, so I will snap one on the next visit. 

Scott and Eric share hair styling tips.

Chaana and Noam give Scott some expert smile lessons. 

Here's Scott during a rare awake period.  

Scott is doing well this morning. He went for an early morning walk and will go for another one in about an hour. Right now he's sitting in a chair and dozing off but is much more coherent. Last night his potassium was high and he had some chest tightness but now he's doing fine. Most of his pain is in his back. The tumor extended all the way to his spinal column and that is where he has been getting pain the last couple of months. The big incision in his chest doesn't seem to bother him at all. Go figure? 

He will be in the ICU until tomorrow and then moved to another part of the hospital. Right now there is a view of the Hollywood sign from the ICU lobby. I also decorated his room with the banner that Maz's class made for him. When he's awake again I will read him all the blog posts, texts and emails. 

Maz is doing great. He had a fun-filled two days at Chaana and Noam's in Culver City. He has already told us that they are more fun than we are. I agree whole heartedly. :) Now Maz is staying with his cousins in Burbank. I left there this morning amidst loud giggles. I told him I would be gone the whole day again and he said "OK" then returned to playing. He won't be able to come see Scott while he is in the ICU. When he is transferred to another room, I will ask for a special pass to get him in. The hospital doesn't allow children under age 12. If I can't get it OK'd for Christmas Day, I plan to either smuggle him in in a duffle bag or dress him up with a moustache. All 12 year olds have moustaches, don't they?

Poster from Maz's class

Hollywood sign

Scott is settled in at the ICU. He will probably be here for 24 hours. They plan to get him up tomorrow to walk and then he will be transferred to a step down unit.  He has some pain --understandably. I'm watching him rest now and feel so incredibly blessed. Thanks again for all the support.

Scott is out of recovery now and we are waiting to see him in the ICU. I saw him in recovery and he is doing well. Very sleepy.

Scott's happy fan club at the hospital!

Great news! The surgeon just came out to speak with us. Scott is all done! They got 95 percent of the tumor and took the pressure off all the vessels, the heart and the lungs. The cancer is slow growing so we can battle that 5 percent at a later date. This is amazing news!!! Thanks so much for all the prayers, good wishes.

Just got a message from Noam. Here's what Maz is up to today. 

Just got word that the procedure is starting. They've been doing prep work for the last 1.5 hours.

No news to update. I just wanted to say how happy we were to arrive at the hospital at 5:15 and see our friend Denise sitting in the lobby waiting for us. We knew she was coming but did not expect her to arrive so early. And I thought we had to get up early. Denise started her morning at 3 am from Santa Barbara. 

Also, just wanted to let everyone know that these posts will likely have all kinds of errors and lack some eloquence since my editor is in surgery.

Scott just headed to surgery. He's in good spirits. 

Final day before surgery. We met with the cardiovascular surgeon who will be helping with the surgery and he seemed confident that he could get the tumor out around the aorta. This evening, Scott spent a lot of time playing guitar, a great way to reduce anxiety. And Maz had an amazing day with Noam and Chaana. After a trip to Home Depot, Noam built Maz the best fort ever. Below is a photo of the two guys at work and one of them proud of the finished product. Noam and Chaana's house will never be the same. 

Scott, Maz and I also did a little early present opening on Tuesday night. 

I will update the blog throughout the day tomorrow. Surgery will start about 6:30 a.m. and will take between 5 and 10 hours.

Fort building

The finished product

Early Christmas at home

Two days left till surgery. Christmas holiday prep work has really ramped up since we seem to be trying to fit in every Christmas tradition before heading up to L.A. on Wednesday. We cut down the tree last week, and Tuesday night we plan to have our jaunt around the neighborhood enjoying the Christmas lights. We took our own lights down early this year after an overloaded circuit caused an outlet to catch fire. We are incredibly lucky the couch and insulation somehow didn't ignite. More miracles!

We've had some busy but great days recently. On Saturday, we went to a carcinoid cancer conference in L.A. We were happy to have access to a lot of the major experts in one room. It was also nice to meet a few other people with carcinoid cancer. We didn't meet anyone with thymic carcinoid, but it was still nice to hear other people's stories and feel part of the "family you didn't want to join," as one woman put it. Our friends Chaana and Noam put us up for the night. It was so nice laughing and chatting with them. After the conference we had a great dinner with my brother's family and my mom. It's always fun to see them (and we will be seeing a lot more of them soon as we are staying with them during Scott's hospital stay). And on Sunday while I worked my last shift before going on leave, Scott and Maz got to visit with Scott's stepdad BobBob.

We also felt so blessed to get a visit from our Philly friend, Denis. Denis asked to be put to work, so now the porch is swept, the Christmas lights have been attended to and the inside of the house is sparkling. Thanks, Denis.

Today, our friend Stacy took Maz to the movies after school and Scott and I enjoyed a super low tide at the beach. So nice to spend some time relaxing before the big day. After a sunset walk, we met up with Denis to catch the very tail end of the sunset and we were also lucky enough to run into our good pal Pendo, post-surf session. It's always fun to hear his animated accounts of the day's waves. Tonight I made one of Scott's favorite meals: pesto pasta. The basil came from Monica and Eric's garden and it was AMAZING! Thanks, guys!

Maz working hard to cut down this year's Christmas tree.

Today at the beach.

What a sunset!

With our good buddy, Denis! Miss you Denis. California is always willing to take you back.

Scott and Pendo

Pesto!

Traveling back and forth to LA hasn't left much time for detailed posts. After our appointment Friday, we stayed the night at my brother's house and then had to get up early to rush back to San Diego for Maz's karate belt ceremony at 11 a.m. on Saturday. He's now a proud yellow-belt.

The plan is to head up to LA on Dec. 18. Scott is scheduled for surgery at 7 a.m. on Dec. 19 at Cedars-Sinai. His surgeon said he should expect to be in the hospital about 7-10 days. I got a miniature tree for his hospital room and I have it on pretty good authority that Santa is stopping by to bring some gifts for Scott and Maz.

Visitors are always nice so if anyone finds themselves in LA around the holidays, please feel free to stop by and see us. I tend to answer texts much faster than email. My cell is 619-272-1401.

The surgery is a go! It's scheduled for Dec.19!

We won our appeal!! The insurance company will have to pay for the surgery. Can't even put into words the relief we feel. Maz summed it up, however, with "Great, I won't have to give you my hundred dollars."

Scott had his hour-and-15-minute Cardiac MRI on Monday and the results look good. There doesn't appear to be any invasion of tumor into the heart. This would have made surgery impossible. We plan to see the thoracic surgeon at Cedars on Friday and get his final word on surgery. We hope it will be scheduled soon but are still awaiting approval from the insurance company. The Independent Medical Review by the state agency should be finished this week. Its decision is binding. We may be celebrating Christmas in a hospital room, but if all goes well, it will likely be our best Christmas ever.

Scott and I are feeling much better after our visit with our San Diego oncologist today. I'm not certain if it's Scott's new symptoms or my appeal to the California Department of Managed Care, but things seem to be moving at a much faster pace now. They are scheduling a Cardiac MRI and our doctor assures us that surgery will be scheduled once the Cedars surgeon looks at the MRI and makes his final approval for surgery. I'm not sure if I went overboard with the appeal to the state, but I sort of freaked out when we got our initial denial of coverage stating that it was "not medically necessary." That letter definitely made me don my boxing gloves.

Yesterday we celebrated Thanksgiving early with family and neighborhood friends. These neighborhood friends have been stepping in as surrogate parents for us while we've been going to doctors appointments, driving up to L.A., getting chemo, etc. Fighting cancer is a full-time job. Our neighborhood community has been such a tremendous support. We are so thankful for all the love and support we've received from near and far.

A bunch of kids.

Craig, Scott and Dean

Mike and Melissa

After Scott saw what Michael was wearing, he had a Madonna-like outfit change so he could copy the look.

Slaughter cousins (and Vincent.) :)

Marja's best Miley Cyrus impression.

We met with our Cedars-Sinai oncologist Thursday and went over the results of the latest CT scan. The chemo has had no effect on the tumor. "Only an insane person would keep doing it," Dr. Wolin said. Stopping chemo is at least some good news. Other good news: Scott's MRI of the abdomen and pelvis showed no metastasis.

We completed another insurance hurdle and saw the contracted in-network thoracic surgeon at UCSD that our health plan referred us to. He said that he could not do the surgery — that it was "almost impossible" — and agreed that the Cedars thoracic surgeon is the right guy for the job, if there is such a thing. He agreed to send a letter to our San Diego oncologist with his recommendation. We will see our San Diego oncologist Monday and hopefully get the ball rolling on another request for the Cedars surgeon.

Scott's sister put us in contact with a good friend of hers who used to work as a patient advocate. She has agreed to help us navigate the process, and that has been comforting. It's been a hard week because as we battle the insurance company, Scott is getting worse. He's now coughing up blood and has increasing shortness of breath. And I'm having trouble keeping my stress contained.

If we are still in the same situation next week and no closer to getting Scott the surgery he needs, then I will make every attempt to get hired at Cedars-Sinai in any department where a nursing job is available. I checked into their health benefits, and they start on the first day of employment. This could be the quickest route to getting the surgery Scott needs. I could also change my status to per diem at my current job and lose the HMO benefits, allowing us to buy health insurance on the open market. But those benefits are not very good and the premiums are very high. I also have had difficulty confirming that the surgeon at Cedars is indeed in the network (two conflicting stories that make me fear jumping ship from the HMO we have).

Anyway, lots of uphill battles. Trying desperately to not lose hope.

Our appointment today with the thoracic surgeon at Cedars went well. He would like to see one more MRI, but he believes that he can remove the tumor. It would be a big surgery, including sternotomy (opening of the chest) and likely Scott being put on cardiac bypass during the procedure.

Yesterday, we had a repeat CT scan to see if the tumor had shrunk. While we have not yet talked about the scan with our oncologist, the thoracic surgeon said the tumor looked unchanged. Chemotherapy doesn't generally work on carcinoid tumors, so we were not terribly surprised by this news. We will meet with the oncologist Thursday and hopefully find out how we should proceed.

We like the thoracic surgeon, and he seems like the right guy for the job. He has done three surgeries of this type and all of the patients are alive. This type of carcinoid is so rare that to find a doctor who has done any surgeries on a thymic carcinoid is not easy. He has also done many surgeries on lung carcinoids so he is accustomed to dealing with this type of tumor. That's the good news. The bad news is that we will have to jump through some insurance hoops before the surgery can be done. All last week, we were on the phone and writing emails appealing the insurance company's denial to see the Cedars surgeon. We saw him today on our own dime (actually, on my brother's dime, since Chris slapped down his credit card with lightning speed--thanks, Chris). After our cardiologist went to bat for us, the insurance company approved a referral to a UCSD thoracic surgeon. We will meet with him on Friday. The UCSD guy seems like a pretty amazing surgeon, but carcinoid tumors are not his specialty, so it is our hope that he will turn us down and we can get our referral for the Cedars surgeon.

Other than that, we had a nice last couple of weekends. My brother Chris and our nephew Nicolas visited us two weekends ago, and our good friend Jeremy drove his hippie bus from Santa Cruz and camped out in our driveway this last weekend. Maz loved going out to the bus for hot cocoa and almond butter and jam tortillas. And Jeremy made me the best cup of coffee I've ever had. So fun to sit in the van, drink a cup of coffee and forget for a second how much this situation sucks. Jer also took some great photos of our favorite beaches.

Nicolas and Maz

The photo above is one of my favorites. And Jeremy wrote a classic caption for it: "I guess that makes me Jesse Pinkman. Our synthesis: Good freaking coffee!"

I apologize for not updating for so long. I have been burried in insurance paperwork. We are seeing the thoracic surgeon at Cedars this morning and I will post later today on that appointment. 

Scott's third cycle of chemo went better than the previous two. While he would not describe himself as feeling great, he's feeling less bad. He has a new patch for nausea that he can wear for 7 days. It constantly releases anti-nausea medicine. And on Thursday, he got a shot that should help prevent him from becoming so deficient in white blood cells.

This week should be a relatively quiet week. Hopefully he will get another CT scan and MRI, but neither have been scheduled. The only concrete plan is on Tuesday he will get a port placed. This will make for easier venous access and will save his veins from getting ruined by constant needle sticks.

His oncologists have already scheduled Scott for a 4th cycle of chemo for Thanksgiving week. That could change depending on what the CT scan shows. Another cycle of chemo might seem kind of sucky, but it would actually be bad news if it gets cancelled. That would mean that the chemo isn't working. The doctors think it is working because his pain is better and because his voice has returned.  We sure hope those doctors are right!

We had a very long, but hopeful, day at Cedars-Sinai. The neuroendocrine tumor specialist, Dr. Wolin, spent about three hours with us. We left feeling hopeful and so fortunate to have an expert like this relatively close. He was able to answer a lot of our questions. One of the biggest mysteries was why Scott's cancer was being called a "primary mediastinal neuroendocrine carcinoid." I couldn't figure out how that was different from thymic carcinoid. Well, it isn't different. It's the same thing. So now we have a more accurate name for Scott's cancer. It's thymic carcinoid. Hearing that made us both kind of freak out at the beginning of the visit, as that is the same diagnosis that Scott's brother, Bo, received eight years ago. Bo died from thymic carcinoid about 2 years ago.

But Dr. Wolin eased our worry. Wolin is so funny, so warm.  He believes that Scott stands a good chance at getting the cancer into remission and "keeping it there." Then he poked fun at Scott and told him to cheer up. "You don't have one foot in a grave and one foot on a banana peel," he said.

There are many treatment options, but here is the immediate plan:

We will do 3 days of chemo next week (Monday, Tuesday, Wednesday) at Sharp, then we will go back up to Cedars-Sinai in mid-November for a repeat CT scan and MRI. We will have another appointment with Wolin at that time and will find out if the chemo has been effective at shrinking the tumor. (Wolin says that thymic carcinoid responds better to chemo than other carcinoids so that is good news, too). We will also meet with a cardio-throracic surgeon that week. Wolin briefly spoke to the surgeon when we were at his office and surgery actually seems like a REAL option. The surgeon is an expert on removing tumors from the lungs and chest. We were so happy to hear this news since cutting out as much of the tumor as possible increases chances at a good prognosis.

We saw Scott's oncologist this morning, and he postponed chemo for one week because Scott's white blood cells are too low. He's expecting them to return to a good enough level so they can blast away at them with chemo again next week. We were sort of pleased because then Scott can enjoy trick-or-treating with Maz and will be in a lot better shape for our trip to Cedars-Sinai on Friday.

On Saturday, we got a jump-start on Halloween with Maz's school carnival. And, of course, the hot dog costume made its 2013 debut. (FYI: The hot dog costume is a joke that backfired on me. I bought it five years ago because I was irritated that Scott would not come costume shopping with me. I figured I'd get back at him by buying him a really terrible costume. But the joke's on me ---- he won't stop wearing it. And not just on Halloween. He totally loves it).

Scott's hoping to catch up on email this week.