The Worst Part Isn't Bad

This surgery went the way the first surgery was supposed to go: one night at the hospital and minimal pain.

Enrique is eating a normal diet, is off his pain meds, and isn't taking anything except his hormones and his calcium supplement.

He's a little moody and still tires easily, but he's beginning to take short walks around the neighborhood and do a little housework. (Hooray!)

The part of his recovery that he hates the most is his bandage. He doesn't mind that everyone can see it. He minds that it is so ratty and dirty and bloody.

"It makes me look homeless."

It is pretty ugly. But it should be gone in a few days. It will either fall off or the surgeon will remove it at his next appointment.

His scar should actually be less visible than it was before. The surgeon reopened (but didn't enlarge) his previous scar.

Apparently, this time she closed it up in a way that makes it appear thinner.

A Stronger Radiation

The tumor the doctors removed on Friday was a bit bigger than 3 centimeters.

The smaller one they left in is about half that size. Enrique's surgeon also mentioned that there are two tiny ones about a half a centimeter in his neck. I hadn't heard that before.

All of those tumors - and any leftover microscopic cancer - will be treated with radiation therapy, in about three-to-four weeks.

They're going to give him a stronger dose of radiation than they did before.

I assume that means more nausea. But hopefully, it will do the trick.

A Persistant Cancer

I wrote in an earlier post that Enrique has an aggressive case of cancer.

That's probably a little too strong.

His disease is very unlikely to kill him or even shorten his life.

But it does seem to be a persistent cancer - one that he'll need to watch for the rest of his life. That's unusual for this type of thyroid cancer.

We met with his surgeon a couple of days ago and she suggested that he'll probably need another surgery at some point in his life. It's likely that it will be years or even decades from now.

Nevertheless, that was hard to hear.

She said her hope was that this round of treatment would mark the end of aggressive treatment -- for good -- and that any future treatment would be more moderate.

Since his case is atypical it sounds like it's tough for anyone to make predictions.

Home

We just arrived home five minutes ago. It feels great.

For Enrique, the best part of coming home is being able to take a shower - so that's his first stop.

I think I may take a nap.

Enrique just came by and asked, "Would you help me with a little ritual? I need you to cut the hospital's security tag off of my wrist."

It's the fourth time I've done it (three surgeries plus one surgery cancelled in the O.R.). Hopefully, it will be the last.

Competence not Privacy

The ward Enrique is in is totally different from the others he stayed in.

There are no rooms (just curtain dividers). But that means the nurses are
always within earshot.

Also, the patients around him seem to be much sicker.

Nothing makes you want a private room like overhearing a discussion of
bloody vomit during breakfast.

The other main difference is that all the staffers have been really
competent and the whole place feels very well run.

In some of the other units, after 24 hours, I was better able to find
supplies and make things happen than some of the nursing assistants.

A low-fat grande

Last night the doctors lifted the restriction on solid foods. Enrique was
hungry and tore into the food I had brought from home.

He slept just ok. They had to wake him up every two hours to measure his
neck for swelling (which has been minimal).

He is still tired, but he has have very little pain and no nausea -- a huge
difference from his previous surgeries.

He isn't taking any pain meds at all right now.

He ate a big breakfast, partly what I had brought from home and partly
hospital food, plus a latte from the starbucks across the street.

It looks like he will be released to go home today. We are waiting for the
doctor to come by.

Seeing Enrique

I just saw Enrique and he is looking great! Much better than after his
first two surgeries. He is talking and smiling and looking fine.

He is in the "Limited Stay Unit" -- that's good because it means he will
likely be in the hospital just a short time.

On the other hand, this ward is totally open, without private rooms or
privacy.

In any case, the most important thing is that he is doing well.

No More For Now

Enrique won't need another surgery right now.

But he may well need another in the future. In the short term, if the
smaller lump doesn't respond to the radiation treatment, surgery is one of
several options to try.

In the long-term, anything is possible. He clearly has an agressive form of
the disese. Even after his hormones level are brought in balance, the
disease could flare up and require another surgery.

He'll need to monitor and fight this desease throughout his life.

The surgery is over

The surgery is over and was successful.

The surgeon removed the larger tumor. They are leaving the smaller tumor,
which is in a less accessible spot, for the radioactive treatment.

Enrique will be in the recovery room for the next hour or two and the
hospital for one or two nights.

This was the shortest of the surgeries.

Quick Update

We got a phone call that the surgery is going well. It should take another
60-90 min. That's great.

We are playing rummy.

In Surgery

Enrique and I left the house this morning @ 6 a.m. for the hospital.

We went upstairs to the pre-op ward and Enrique changed into a teal
hospital gown.

A bunch of different doctors and nurses started coming in one by one,
asking questions - usually the same ones.

"What's your name and birthday? When did you last eat? Any allergies to
medicines?"

After a while, Enrique's surgeon came in and we all greeted her as an old
friend and introduced her to Enrique's sister.

Soon after he lay down on a guerney and got an injection of a sedative. We
each gave him a kiss goodbye and they wheeled him away.

That was twenty minutes ago. Just now I got a call telling me that the
surgery has begun.

World Class Medicine

Today we waited for the call from the hospital that would tell us when Enrique's surgery will be held.

The phone didn't ring.

By the time Enrique called the hospital to find out, he was told there was no one there who could tell him.

He called his surgeon and she told him that the surgery will be at 7:30 a.m. tomorrow, with a 6:30 a.m. arrival time.

We frequently hear that UCSF is the best of the best. Often, it's believable.

Other times -- say, when they don't call to tell us when we need to arrive at the hospital for surgery -- we are left wondering.

In any case, the early surgery appointment is good. There's less chance of a delay caused by an earlier surgery and there's less time for Enrique to get hungry.

He won't be able to eat after midnight tonight. Luckily, we had a big, delicious dinner at Kokkari and are all ready to go a week or two without eating.

Fanning the Flames

We just spoke with Enrique's surgeon by telephone with a few last minute questions about the surgery.

She reminded us that the tumor she is removing wasn't there in October. It grew from microscopic bits of leftover cancer that were too small for her to see -- and that weren't killed by the subsequent radiation therapy.

In six months, it has grown to over three centimeters.

That growth is fueled by Enrique's brain, which is sending out a signal to his remaining thyroid cells to grow and produce more thyroid hormones.

That's happening, at least in part, because his dose of synthetic thyroid hormones has been too low. (They've been raising it steadily over the past six months and just did so again.)

As she said, until we get that hormone level right, "we're just fanning the flames" of his cancer.

Cleared for Surgery

Before each of Enrique's surgeries, he has his throat checked out by a specialist for any issues that might get in the way of the surgery.

His appointment was today. The doctor cleared him for surgery.

That doctor's shares his office with a plastic surgeon. While you wait you can peruse before-and-after photos and Restalyn brochures.

The final check for surgery doesn't actually come until the morning of the surgery, when they run some blood tests.

After The Surgery

We're hoping this surgery will be more like his second surgery than his first surgery.

These are just guesses, but I'm hoping this surgery will take less than five hours and that he'll spend just two nights at the hospital.

(The first surgery took nine hours and he spent seven or eight nights at the hospital).

So far, there haven't been any warnings about some of the risks that accompanied the first surgeries (damage to the vocal cords or loss of function of nearby organs).

The Silver Lining

Enrique's sister is in town for a week. They hadn't seen each other for a year and a half. She and I had never met. It's been a pleasure getting some time to spend together.

Enrique's parents arrive tomorrow.

As he says, there is nothing like seeing your mom.

Cause of Cancer

Enrique often wonders why he got cancer.

The two classic causes of thyroid cancer are a family history of the disease or exposure to radiation.

Neither seems to be the case for him.

I've read that there has been an unexplained rise in thyroid cancer in recent years. But we can only guess why Enrique got it.

Treatment vs. Disease

So far, Enrique has suffered no symptoms from his cancer.

Since the beginning, the cancer has caused no pain, no nausea, no shaking and no scars.

All his symptoms have been the result of his treatment.

99.99% of time we believe his doctors when they tell us that the treatment is necessary. That he would eventually die without his surgery and radiation treatment.

But, sometimes I find myself thinking, "If only his doctor hadn't found that lump, we would have been saved all this trouble."

What to Expect

Each time Enrique goes in for surgery he has an appointment at the "Prepare Clinic." This is a three hour appointment with an anesthesiology resident and several different nurses and admins.

This is the fourth time we've done it and it was the best. The resident was very competent and went through all the things we should expect.

Of course, this time we already know what to expect, so it didn't matter much. But, it was nice to see a good, young doctor in action.

It was the first time the doctor was clearly younger than we are.

In addition to the doctors being younger than us, this is what we can expect:

-The day before the surgery Enrique will get a call that will tell him the exact time of his surgery
-He can't eat or drink after midnight the night before, but he can take some of his medications with a sip of water
-The day of the surgery, we'll check into the surgical waiting room, complete with overnight bags for both of us
-Then we'll go into a pre-operative room (Enrique, his parents and I - and probably his sister this time, too)
-He'll change into a hospital gown and lay on a guerney while we wait for the anesthesiologist to come by and ask him a few questions
-His surgeon will stop by and initial the side of his neck where she will operate, with a pen
-Finally, they'll inject him with some quick acting "happy drugs" and wheel him into the operating room and we'll all waive goodbye.
-In the operating room, they'll sedate him further and he'll fall asleep

Surgery Confirmed

Enrique's surgery is confirmed for June 22. We won't know the time until a day or two before.

Between then and now, he'll have a couple of different doctors appointments in preparation.

Two Weeks From Now

Nothing is certain yet, but Enrique's surgeon is aiming for the surgery to take place on the 22nd of June. That's a Friday.

I'm glad, because if it had been earlier we probably would have missed the wedding of some friends.

Last year he got his first diagnosis right before we went to another wedding. We managed to have a good time at the ceremony, but didn't do so well afterwards, when we were on our own.

Looking back, it's clear we're doing a lot better this time.

Family Reunion

Enrique's sister is planning to come for his surgery. Her plans aren't definitive yet, but she's hoping to come for a week, beginning just a couple of days before the operation.

It means a lot to Enrique that she will be here, on an emotional level. He can't wait to see her.

On a practical level, she'll be able to help him and his parents, since she speaks English fluently.

I am also looking forward to meeting her, for the first time.

She lives in the Netherlands with her husband.

At the Endocrinolists

At the appointment today, the endocrinologist said essentially the same thing that Enrique's surgeon said on Monday: surgery followed by radiation therapy, about a month apart.

He also is going to raise Enrique's level of thyroid hormone which should improve Enrique's mood (and lower his weight).

The endocronoligist is a very nice, soft spoken man with a hearing aid. I'd say he is pushing 80 (possibly pulling it). He was wearing a very clean white coat.

I asked his young resident why she didn't where a white coat. She told me she doesn't like white.

Scheduling Surgery

The surgeon said, "We probably won't have time to do the surgery this week."

It amazed me that this week was even a possibility.

She's aiming for the following week or the week after.

If it's like it was before, it'll require finding an opening in three doctor's schedules and will be uncertain until just before it happens.

Enrique will likely be out of work for three-four weeks between recovery and radiation therapy, assuming there are no complications.

The Resident's Boots

The resident who told Enrique that his cancer had returned was wearing knee-high leather boots, with her pager clipped to the top of them.

She received and responded to a few texts during our appointment.

She also had a nervous smile that she couldn't get rid of. It's the kind that you get when you're absolutely not supposed to be smiling, but you can't help it.

She tried to look extra-concerned at the same time -- to make up for it -- and sort of turned down the edges of her smile.

That happens to me sometimes, so I could sympathize.

Here is something I don't understand: all of the doctors we see wear white coats and lots of them are really filthy, including both of these doctors.

Wrong Message, Wrong Messenger

We really like Enrique's surgeon. So, when were waiting inside one of the consultation rooms at her office and the door opened, we were looking forward to seeing her. Even on a day we knew might bring bad news.

Instead, an unfamiliar resident walked in.

She started asking questions that seemed dumb to us. Was he having any difficulty breathing? How was his voice?

Since his last surgery was over 6 months ago -- and none of these issues had ever come up -- none of it seemed really relevant.

Then she told him the results of his scan and that his cancer had returned.

Obviously, that was awful all on its own. We were also really pissed off that the doctor hadn't told us herself.

It didn't help that we had been waiting an hour and no one apologized.

So much for our theory that you don't have to wait long for bad news.

At least this resident was competent. She answered our questions and the doctor didn't have to contradict her when she came in later.

False Assurances

It seems pretty clear that some of the assurances we received over the past few days -- to not worry about the results of the scan and that Enrique wouldn't need to go through treatment that was like what he had been through before -- were wrong.

We may have been too optimistic; but it seems that the message that the doctors sent were too.

I wonder why.

Enrique's Diagnosis

One of the areas where the surgeon previously removed malignant lymph nodes from Enrique's neck now has cancerous nodes again.

This is the "big" lump they biopsied last week. It will need to be removed with a surgery.

The scans he had the week before revealed a "small" lump that is probably cancerous. It will be treated with another round of radiation therapy, a couple of weeks after the surgery.

Enrique's overall prognosis remains good - but he clearly has a serious case of thyroid cancer. The doctor said it's unusual to need another round of surgery but it doesn't mean that his long-term prognosis is worse.

At the same time, it's unlikely that there will be a point in time when this totally over. It will always be with him. With luck, he won't need this much intense treatment once this round is over, but there are no guarantees.

E will need another surgery and radiation therapy. Although his cancer has returned, his prognosis is still good. Surgery will be in 2-3 weeks.