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.