Nice things, Phone calls

People continue to do lots of nice things for us and it is much appreciated.

Calling, sending supportive emails, meeting for meals, cooking meals for us. My parents are sending us for much needed massages this weekend. Folks have made many other offers - more than we could possibly accept. Thank you everyone.

I am sorry that I am not keeping up with my voicemails very well. I often just don't feel like picking up the phone these days. It's still nice to get the calls, but forgive me if I don't get back to you very quickly.

Next Week

Both of Enrique's parents will be coming on Tuesday. He is really looking forward to seeing them. I am too - especially to meeting his father for the first time. They'll be staying for about two weeks.

The surgery is scheduled for next Thursday. We won't know the time until this Friday.

It was very difficult to get ourselves all psyched up for the surgey and then find out at the last minute that he'll have to wait another week.

Similarly, we had gotten used to the idea of a basic thyroid cancer - and it's limited risks. Now that it may have spread, we are going through another round of fear and uncertainty.


At Friday's appointments, we hope to get a better understanding of Enrique's latest prognosis.

Friday's Appointments

Enrique and I went to UCSF to get him an additional blood test yesterday. We were also hoping to see the surgeon to learn more about the latest news she has given us. Unfortunately, she won't be available until Friday. That leaves us worried.

Also on Friday we'll be going to an appointment with a thoracic surgeon to learn about the risk to Enrique's voice and vocal cords.

Appointment Tomorrow

Enrique and I are meeting with his surgeon tomorrow. We were already planning on going in for some blood tests.

Enrique is calling his mother to postpone her visit until the new surgery date.

Surgery Postponed. Cancer Spread?

Enrique spoke with his UCSF surgeon today and got some troubling news. She reviewed the biopsy and images that were taken in the other hospital and is concerned that the cancer is not limited to the thyroid - but that it may have spread.

She is worried that it may be in the surrounding lymph nodes and that there is a risk that it may affect the major blood vessels that carry blood to the brain and the nerves that affect Enrique's voice. She wants to have additional surgeons (specialists) present during the surgery in case their expertise is required.

So that everyone can be present, the surgery has tentatively been postponed until next Thursday, Sept 7.

talking with friends

Enrique had lunch with a good friend who had the same operation about a year ago at the same hospital. They ate at Boulette's Larder, of course.

It really helped Enrique to hear about her experience - which was similar to what the smooth experience the doctors have promised him. She said that he should expect to be tired and moody for a few weeks afterwards,

She and Enrique have similarly sweet dispositions. Usually when one of them is apologizing for being "moody" the rest of us would be congratulating ourselves for being so even-tempered.

I mentioned this to Enrique and said they both tend to apologize more than they need to. "I guess that's the Catholic in us."

In addition, one colleague and one cousin of mine told me they had each had the same surgery. I had never even noticed the scar - which is barely more visible than a wrinkle.

More about the surgery

Today we had a long appointment in the "prepare" clinic at the hospital, where they get you ready for surgery.

The surgery has been confirmed for Wednesday at 1:30pm. That means enrique will have to arrive at the hospital at 11:30 am. He won't be able to eat after midnight the night before. He'll be able to have a limited amount of clear liquids like tea or apple juice up to four hours before the surgery.

In the preparation room, he'll be sedated with drugs that cause a loss of memory. Since I'll still be with him at this point, I joked that this will be "A good opportunity for me to tell you what I really think of you."

Our well-connected friend kindly got him on the list for a private room, for after the operation. I should be able to spend the night in the hospital with him, unless the nurse objects on medical grounds. I'm bringing my sleeping bag, mat and toothbrush.

Another Specialist

Yesterday we met with an endocrinology resident and another endocrinologist to discuss enrique's treatment after the surgery. It sounds pretty straightforward. They do some "very sensitive blood tests" to determine the amount of the synthetic hormones he should recieve and after some adjustments and 1-2 months of getting used to it, he should be feeling himself.

They also provided a sorta-second opinion on the necesity of removing the entire thyroid. I say "sorta" because they didn't have the pathology report that determined that the nodules are malignant. Nevertheless, they felt that the location of the nodules (one one side and in the center) eliminated the possibility of simply removing part of the thyroid.

That option never seemed likely, but it would have been nice because the thyoroid continues to functions and no synthetic hormones are required.

Survery Moved Up One Day

Enrique's surgery is now set to take place on Wednesday, August 30. The change is purely for scheduling reasons. It'll take place in the afternoon. The time hasn't been determined.

Enrique's mother lands that morning around 10am. It's going to be a long day for her, I'm sure.

A Second Opinion

A good friend referred Enrique to another doctor for a second opinion. Right now he's trying to get on that doc's schedule.

There's no reason to think that a second opinion will be different from the first. His condition seems to be pretty straighforward and his surgeon comes highly recommended. Nevertheless, you can't put a thyroid back inside, once it's out.

So it seems wise to get a second opinion, purely as a precaution. We don't know when this appointment will be or even if it will happen.

A little good career news

One of the buildings that Enrique designed won another award - its third award (so far). I'm very proud.

Also, I just learned that I'm going to start doing some freelance work for a new client for the next few months. I am really excited about that.

a little fun, a little paperwork, a lot of support, a lot of Boulette's Larder

Even on a bad day, like today, we're still managing to have some fun and relax and enojy each other's company. This evening we're watching a little TV and having a cocktail and a few laughs. Last night we went to a friend's house for homemade japanese food and champagne.

Later tonight we're going to do some of the paperwork that needs to be done before Enrique goes into the hospital. My father has helped with that. Thanks Dad.

We've gotten a lot of support from family and friends and lots of offers of help. It is all much appreciated.

Enrique's mother is flying in Wednesday the 30th. My mother may come in to the city, too.

Later this week Enrique is meeting with a friend who had the same operation to hear about her experience. It'll be another lunch at Boulette's Larder. I think we'll end up going every day this week - it's our comfort food.

It's Cancer

We went to the doctor's this morning and got the results of the pathology. It's cancer.

It's what we expected, and it doesn't change any of the plans for surgery, etc. Nevertheless it's a shock to hear it. We're both feeling a little nauseous.

We walked from the doctor's office in the Castro to our favorite coffee shop in Hayes valley and then to the Ferry Building for lunch at Boulette's Larder.

having a good employer helps

Enrique's colleagues and bosses at Studios Architecture could not have been more supportive.

It also helps that they offer good health insurance. We learned today that Enrique's surgeon is not on his plan, but the cost will still be mostly covered by insurance.

Speaking of employers, I will be leaving mine to become a contractor in a couple of weeks. I'm excited to be working from home.

Although the change is not related to Enrique's condition, it will be nice to have some flexibility so I can take better care of him.

Surgery date and other appointments

The surgery has been set for Thursday, August 31. There is a minor chance that something will change based on the biopsy results. Hopefully we'll have those by the end of the week.

We're meeting with Enrique's primary doctor tomorrow, for the first time since he detected the lumps a few weeks ago. While everyone seems to agree that surgery is probably the right thing, this will be the first time we get to discuss everyone's input (radiologist, surgeon, etc.) with him.

On Thursday, we're meeting with an endocrinology fellow to learn more about the ongoing treatment that Enrique will recieve after the surgery. Before then, we're meeting with a good friend who had the same surgery to learn about her experience.

change of dates

Enrique spoke with the surgeon today and it looks unlikely that the surgery will take place this Thursday. The biopsy results probably won't be in and no one wants to rush.

Most likely, it will happen on Thursday, August 31 or possibly on Thursday, September 7th.

Enrique's parents were already planning on being in town from Sept 7-18 for his birthday. Now, his mother will probably come earlier to be here for his surgery.

We had a good weekend out of town at two friends' wedding. And then a six-hour, six course lunch at the home of other good friends.

Enrique is in mostly good spirits. Good food, a cocktail and a hug help a lot. This morning we had breakfast at Boulette's Larder.

what the surgery is like

The operation takes about 2-3 hours. They'll remove all or part of the thyroid (all if it's cancerous) and the surrounding lymph nodes, which are swollen.

the risks are pretty minimal:

• nerve damage, which could cause a permanently hoarse voice (that's what happened to Julie Andrews)
• damage to surrounding tissues that regulate calcium intake (this would mean having to take daily calcium supplements)
• internal bleeding

All of the above happen in 1-2% of cases.

the surgery

Although the biopsy won't be ready for a week or so, it's almost certain, from the sonogram and CAT scan, that enrique will need surgery and that he'll need to be on the hormone replacement drugs for the rest of his life.

Everyone keeps saying this isn't as bad as it sounds. We're beginning to believe them.

Here's what will happen:

• If the biopsy is back in time Enrique will have surgery on Thursday August 24
• If not, it'll likely be Thursday, Augst 31
• He'll spend one night in the hospital
  
• Afterwards, he'll need a week to recover, at home
• Then he'll need a radio-iodine treatment

That last treatment is a radiation treatment to clean up any remaining cancerous cells that the surgery leaves behind. During those three days he'll be radioactive - literally. The surgeon said 'You won't be glowing, but you'll need to stay away from children." Not just children, he'll be confined to home.

After that, it's just a matter of find the right level of medications, working with an edocrinologist (who we'll meet in a few days). Everyone agrees UCSF is a great place to be treated generally and for this ailment in particular.

visiting the surgeon

Enrique's uncle picked us up and took us to UCSF for the appointment with the surgeon. We were nervous. Everyone in the waiting room looked like they were in much worse shape than Enrique.

After an hour of paper work and waiting, we met the surgeon. When I saw her I realized that I had been hoping for a certain type: male, middle-aged and very intense.

Instead she was young (maybe our age), female and very laidback, in a professional way. It didn't seem like a good sign that she was wearing wrinkled clothes, but she quickly won us all over.

Later we heard from a reliable source that she is extremeley well-regarded.

our mood, next steps

We've both been on a rollercoaster and feeling one minute like this will be easily solved and then the next minute very frightened.

Later today we're going to see a surgeon at UCSF for a premilinary appoint to discuss surgery, if it's necessary.

the results

After the scan was over, Enrique got dressed and we met the radiologist to go over the results. Looking at the results of a CAT scan is actually pretty cool. The doctor zoomed from his thyroid to lungs and back again on a large computer screen.

He showed us that Enrique's lungs and organs are in good shape. But that his thyroid and the surrounding lymph nodes aren't. He said that based on what he was seeing there is a "60% chance" that it's cancer - papillary carcinoma.

Here is an article about it. It says the "overall cure rate [is] very high (near 100% for small lesions in young patients)"

We won't know for sure if it is cancer until we get the results of the biopsy in 7-10 days.

If it is cancer, this is one of the easiest types to treat and it looks like it is very early stage.

the CAT scan

For the CAT scan Enrique lay down in a lab on a moveable platform that would pass him through large donut shaped xray machine that would create a detailed image of his body.

He had to drink a special solution to increase the accuracy of scan, one that nurse warned would casuse hot flashes for a few minutes. He said afterwards he wanted to get some ice cream.

I couldn't be with him during the scan, so I went to the cafeteria to scope out the ice cream situation.

The gory details (you might want to skip this part)

The first needle drained the liquid-filled nodule. About one teaspoon of urine colored liquid came out.

The doctor poked the next needle around a lot. Enrique found this painful. For me it was distressing to watch. The doctor said he needed to dislodge some tissue.

Throughout the procedure, the technician held the sonogram wand up to Enrique's neck, so the doctor could watch himself work on the computer screen.

When the third needle was in his neck, enrique turned white, squeezed my hand and asked them to stop (which they did). Then he fainted.

Since he was already laying down, this wasn't as bad as it could have been. He looked like he was having a brief seizure. His eyes rolled back and his arms jerked and he moaned. In 5 seconds, he was back. "I blacked out."

They were ready to stop taking samples, but he wanted to make sure they got all the samples they needed. "I just need a five minute break."

After they took the fourth sample, he doctor said he wanted Enrique to have a CAT scan, the same day.

the biopsy

The morning of the biopsy we were both pretty nervous. But we both went to work for a few hours.

When it was time to go, I picked up a Prius from City CarShare , two Mango smoothies from Jamba Juice and then picked up Enrique at his office.

We drove to the hospital on California and Cherry streets and registered for his appointment.

This time the technician was sweet and professional. He was joined by a radiologist who we both liked immediately.

They gave him another sonogram and told us that there was a nodule filled with liquied and others that were soft tissue or calcified. This was bad news. Also the fact that Enrique is a young male wasn't a good sign (apparently benign nodules are vey common in women).

They explained that they would put a needle in Enrique's thyroid about four times to remove liquid and tissue for testing. Enrique hates needs.

90% of the time they get a definitive result; the other 10% they need to redo the test.

telling people

My preference was not to tell people. Enrique's preference was to tell people. In other cases I wouldn't mind telling, but it didn't seem like my role.

This led to a couple of akward moments.

For instance, I'd meet a couple of friends, they would ask "How is Enrique?"

I'd say, "Fine." 10 minutes later he arrived and answered the same question with, "I have a nodule in my thyroid, hopefully it's benign."

No worries

Based on the nodule article we decided not to worry. Even after Enrique's doctor said that he didn't like "the shape, the size or the number of the nodules" and wanted to schedule a biopsy THE NEXT DAY -- we decided that he was a worrier and that the biopsy would vindicate our optimism.

The was no time slot for the biopsy until the following week. A good friend, who is well connected, very generously offered to pull some strings and get Enrique an earlier time slot, but he declined (much to my chagrin).

Anyway, Enrique has had zero symptoms that are associated with thyroid problems. No night sweats. No unexplained change of weight.

the sonogram

Enrique and I went together to get his sonogram at Davies Medical Center. The technician was a sweet and sour queen who told me I could stay in the room with Enrique, "If you don't ask any questions."

"You can go fuck yourself!" I thought, but I kept my mouth shut.

I held Enrique's hand while the technician put the gel on Enrique's neck and passed the wand over his neck again and again. He took what seemed like dozens of images and was constantly typing into the computer.

Afterwards we looked at the images of the sonogram on the computer screen. The technician wouldn't tell us anything about them. They were grainy and blurry like the images of a feotus.

Enrique joked, "It's a boy!"

how it started

Enrique got a routine physical - his first in a long time - because he is turning 30. The doctor felt some nodules in his thyroid gland and scheduled a sonogram for Enrique.

Usually nodules are benign and don't have need to be removed. Sometimes they're cancerous.

Here's a short article about them http://www.endocrineweb.com/nodule.html

why a blog

So we're creating this blog to let folks know what's going on with Enrique's health. The idea is we easily let folks know what's going on without sending out emails that you may or may not want to get. When there is an update, we'll post it here.