Surgery Started at 5:50pm

E.'s blood sugars have been running way high all day. Despite numerous insulin injections, it was still over 300 at the time of surgery. The anesthesiologist ordered some kind of insulin kit to keep E.'s blood sugar levels stable during the procedure. E.'s platelet count was also low (115,000) so he had to receive a unit of platelets prior to surgery.

The orderly wheeled E. to pre-op at 3:15 to get him ready for the scheduled 4:00 surgery. We went down the hall, down the elevator, down the other hall and through the doors of pre-op when we were informed that the neurosurgeon was still in surgery at the hospital across town. Back to room #437 we went to wait it out.

Take #2 started a couple of hours later. The anesthesiologist met with us, as did the neuro surgeon (and also the neuro surgeon assisting him). Charts were reviewed. IVs were started. Procedures were discussed.

Then it was time for one last kiss.

They wheeled him into the operating room at 5:5o pm.

And now we wait.

Surgery is Scheduled

We were able to speak with the doctors at MD Anderson early this morning. They were able to review the CT report and the MRI report. They agreed that the tumors needed to be removed as soon as possible. They supported having the surgery locally as traveling is a concern. Not only are E.'s blood sugar levels problematic, but there is a significant risk of the tumors pushing on areas of the brain causing seizures. Although E. has yet to experience a seizure, we certainly don't want to be on an airplane if one hits.

We've spoken to several people about the neuro surgeon and have heard nothing but rave reviews. The final confirmation came when E. was able to talk to an old college buddy who is a surgeon as well. He stated, without reservation, that there is one neuro surgeon he would recommend hands down ... and that's the one E. has!

So, it's settled. E. is scheduled for brain surgery ("right fronto occipital craniotomy") ... tomorrow (Tuesday, August 24th) at 4:00 pm. We've been told by the floor nurse that surgery is expected to last about three hours, but we haven't yet received any details from the doctor. He'll be in to review things with us in the morning.

Because of E.'s slow moving digestive system, he's on a liquid diet today and he'll switch to nothing by mouth at midnight. There will be no midnight runs to Wendy's. And in order to insure that, E.'s hospital bed now has the alarm activated. Anytime he gets out of bed, the alarm goes off. You can imagine how happy that makes him.

As it stands now, the plan is to have surgery at 4:00 tomorrow afternoon, spend a couple of days in ICU, a few more days in a regular room, and then go home. I will do my best to update the blog as I can, since I know many of you want the news as we get it.

We appreciate all the prayers, thoughts and positive mojo. We're using every bit of it.

S.

MRI Results

The neuro surgeon visited with us about an hour or so ago.

The MRI confirms what the CT scan said. There are two tumors, most likely metastatic cancer - based on E.'s history and the rounded spherical shape. They appear to be a little larger than initially thought; one is approximately 5 cm and one is between 3 and 4 cm. (I think I switched the locations too ... I guess the larger one is in the back.)

The neuro surgeon said that they are large enough to remove, rather than simply biopsy during surgery. The plan would be to remove the larger tumor first and then depending on how things went and what they saw, remove the smaller tumor. It would essentially be two operations within one surgery. After the surgery and pending no complications, E. would be in ICU for 1 to 2 days and another 4 or 5 days in a regular room. The surgeon could perform the surgery as early as next week. (Cyberknife does not appear to be an option because of the size of the tumors.)

E. is hesitant to rush into making a decision. He doesn't want to feel rushed or pressured, and then regret not taking more time to check things out, like we did with the initial diagnosis. He wants to send the MRI to his doctors in Texas for further consultation. While the report can be faxed, the CD of the films must be mailed. There is also a chance he might seek a second opinion with another neuro surgeon here locally.

In the interim, E. is stuck in the hospital. The steroids he is receiving (for the brain bleeding and swelling) are making his blood sugars go all out of whack (like pushing 400). Because of that, he has frequent insulin injections. So, St. Mary's becomes the temporary home away from home.

S.

Morbid Humor

When you've got tumors pushing on your brain, things can get messed up. Obviously.

Take for example, the phone call I got from E. at 4:30 this morning. E. told me that he woke up and went into the hall to make breakfast and start making lunches for the kids to take to school. After talking about it being Sunday and VERY early in the morning, E. told me he'd better let me go as he knew I was busy making breakfast and lunches and getting the kids off to school.

Oh wait, it gets better. Way better.

E. told me that the nurses took away his street clothes. Huh? I inquired. Well, I guess when you decide to take a midnight stroll to Wendy's for a burger, they don't like that very much. Or when you return to the hospital and all the doors are locked, so you wander around outside. Or when a security guard finally helps you find an unlocked entrance and finally make it back to the floor and get comfortable in the wrong room. E. was not a happy camper. He said they locked his damn clothes in a cabinet with a zip tie. He was adamant that I bring him his finger nail clippers so he could bust the zip tie and rescue his clothes. And to top things off, when he finally got to his room, his damn burger was cold! (Oh, and when I expressed concern for his safety while he was walking the streets of the city, E. assured me that he had protection ... a plastic knife from the cafeteria!)

When I got to the hospital at 5:45 a.m., I was surprised to find E. in his street clothes. I asked what clothes they had locked up and he said it must have been his other set. When I pointed to the other set of clothes on the shelf, he was then convinced it was his Carhartt winter coat. Despite the fact that I pointed out it was August, he was convinced. He continues to think of ways to get into the cabinet (there is in fact a cabinet which is zip tied shut).

While E. knows that he is in the hospital, knows who the President is, knows his name and his birthday and knows what year it is, other things escape him. He asks same questions over and over. We frequently have the same conversations. He doesn't remember things. He gets confused. It is hard to reason with him. Sometimes he realizes that things aren't lining up, and that frustrates him. Or he tries to joke his way out of the situation. Most of the time though he thinks he is right and gets pissy if you try to correct him. I am patient with him. I know it is not his fault. Thankfully there are lots of good conversations too and he definitely hasn't lost his sense of humor or his feistiness.

Sometimes I can't help but laugh. It can be so funny. But sometimes it's not funny at all.

I worry about leaving him alone.

S.

Curve Ball???

Did we say we had a curve ball thrown at us? Ha! The pitcher was just warming up. We didn't even have time to get out of the way of the next ball. Never even had a chance to put our batting helmets on. Hit by the damn ball. Right upside the head. It's gonna leave a mark, I'll tell ya, it is.

Since returning from our very uneventful trip to Texas last week, E. has had several episodes of being "off." Driving was the biggest issue. His passengers voiced their concerns ... he was in the bike lane, he missed the turn, he cut people off. He got lost. Once, twice, three times. Familiar routes, routes that he should have known, routes that he's driven a hundred times. He attributed it to some new prescription glasses he needed to get used to, or possibly an inner ear infection, or maybe even a sinus infection. In hindsight, there were a couple of other red flags ... forgetfulness, confusion, not staying with the conversation (I seriously thought he was just being a butthead). There were also a few headaches, a couple of which were incapacitating.

After getting lost yet again Friday evening, I knew something was wrong and I was scared. When I told him that something wasn't right and he replied with "I think you may be right," the fear spilled down my cheeks in tears. It took some coercing (and more tears) before we finally made it to the emergency room. Once there, it was hours of waiting, followed by a CT scan, followed by more hours of waiting.

Eventually, this is what we found out ...

There are two tumors/masses/lesions (all these terms have been used by the doctors). They are quite large. One is approximately 4 cm and is in the right front temporal lobe. The other is approximately 3 cm and is in the right rear area (forgot what part of the brain he said). There is some hemorrhaging (bleeding) and some swelling of the brain.

There is concern that the symptoms came on so quickly. This could mean that the tumors are quick growing. If you're like us, you're thinking, "How can this be? How can this happen when he just had a clean PET/CT scan about a month ago?" At 3:00 a.m., I e-mailed the thoracic surgeon at MD Anderson ... at 4:44 a.m. he responded. Several hours later, I received a phone call from his physician's assistant. All this on a Saturday. Impressive. Anyways, as it turns out a PET/CT isn't real definitive for the head/skull/brain area. If E. had presented with any of these symptoms while we were in Texas or if there were any other red flags, an MRI would have been ordered right then and there. But, all was fine. E. looked and acted healthy. There didn't appear to be any reason to do any further scans.

It is assumed that E.'s esophageal cancer has metastasized to the brain. There is a possibility that it is a new primary brain cancer. There are also a couple of other less serious possibilities, which would certainly be welcome at this point. They won't know for sure until they actually get in the brain and remove the tumors.

The tumors are pushing on the brain. As E. says, there's not a lot of room in there with the size of his massive brain as it is, so things are definitely squishy in there. There is some swelling. There is some bleeding. All of that causes the symptoms we are seeing. E. was started on some IV steroids to help with the swelling and bleeding. He was then admitted to ICU for observation, for a night of sleep and relaxation (not!). The neuro surgeon explained to us that the tumors definitely needed to be removed. It is not a surgery that needs to be done in the next five minutes, but it will need to be done soon. As the tumors grow, they will only create more havoc in E.'s life. There will probably be more chemotherapy in E.'s life, and probably more radiation as well.

Unfortunately, the CT doesn't offer a ton of information. Additional information is needed to know more about what we're dealing with and to figure out a game plan. So, an MRI was ordered (and just completed moments ago). E.'s been transferred to a regular room (yay!) and is still getting IV steroids. The neuro surgeon won't be back until tomorrow morning, so that is when we'll get the MRI results and know more.

Told ya it was a stinger.

P.S. Feel free to e-mail or text. Phone calls are often tough to answer in the hospital with nurses and doctors in and out, but we will do our best to return calls too.

Another P.S. E. wants you all to know that he is no longer on the road.

Left behind

For the first time ever, look who got left behind.

Since the plan was to have surgery,

we knew having him on this trip wouldn't work out.

(Crappy cell phone quality picture, but still cute as can be.)

Man how we miss the little bugger!

Curve Ball

We're back at MD Anderson for the pre-op appointments in preparation for the surgery that WAS scheduled for tomorrow.

Yup. Was. As in, past tense. As in, no longer happening.

Here's what went down:

We met with Dr. M., the surgeon, for well over an hour. He was kind, and sensitive, and informative, and, well, totally contradictory.

Dr. M. had reviewed E.'s records and scans. He palpitated E.'s questionable lymph node in the neck/shoulder area. Only he couldn't feel anything at all. He indicated that because the lymph node has been "quiet" since the PET/CT scan in September of 2009 (that was NED) and because he couldn't feel any sort of enlargement, he was thinking surgery might not be the best option after all. Like any surgery, a lymph node dissection does not come without risks. Risks include 1. bleeding, 2. damage to the laryngeal nerve (which could effect E.'s voice), and 3. damage to the phrenic nerve (which has something to do with the diaphragm). It was the recommendation of the tumor board though to dissect the lymph node and send all removed lymph nodes to the pathologist. If positive for cancer, the area of the lymph node could be zapped with radiation, or there could be additional chemotherapy. If all the pathology reports came back negative, the esophagectomy could be offered then.

If E. was going to be put under general anesthesia, Dr. M. suggested that possibly he would want the entire esophagectomy done at the same time. Huh? The big surgery? The big surgery that we've wanted for a year? The big surgery that we planned on? The big surgery that was ripped out from under us? THAT big surgery?

You can imagine the looks E. and I gave each other.

Dr. M. repeatedly reiterated that right now, E. is "cancer free." It is "very unusual" for an "advanced staged cancer patient" to be cancer free a year later. The fact that E. as a Stage IV esophageal cancer patient is still N.E.D. almost a year out is amazing. Can I get a big AMEN? Or more like something I'd say, how about a big HELL YA?!?

Putting E. through such an intensive surgery as an esophagectomy is debatable. Dr. M. is hesitant to "disturb the body where things are going so well." Yet, there are enough arguments to go through with the surgery as well. There is no scientific data one way or the other with these particular sets of circumstances. Removing the area of the original tumor would obviously minimize (or eliminate) a recurrence in that area. The entire specimen, as well as any removed lymph nodes, could be biopsied. It would be hoped that there would be no cancer at all, but if there were still some microscopic viable cancer cells, more chemotherapy could be prescribed. With such a big surgery, there are also risks for complications (8-10% for major complications according to Dr. M.). In particular, there is one vessel to the stomach that can become damaged which would cause gangrene of the stomach, a complication more common among diabetics like E. Overall healing usually takes about six months, although that time can be extended depending on complications (like leakage). There can be some complications after a successful surgery as well. Dr. M. estimated that 90% of his patients tolerate the procedure very well once they've healed, but approximately 10% have on-going issues with reflux and "dumping" (light headedness, heart palpitations, dizziness, diarrhea).

What would Dr. M. do? It is a difficult situation with no easy answer. He hemmed and he hawed, and he went in a thousand circles, but eventually Dr. M. said, "I would wait." He would follow up with regular PET/CT scans and endoscopies every four to six months. If there is evidence of a recurrence, a "salvage esophagectomy" could be performed at that time. Dr. M. indicated that operating if the tumor recurs gives just as a good chance as operating now. He stated that the odds were that if there was a recurrence though, it would probably be distally rather than locally, in which case surgery wouldn't help anyways. If there is residual cancer in the body, we have the advantage of time already. The more time that goes by, the better the chances are that the cancer beast won't rear it's ugly head again.

Esophagectomies are standard treatment procedures for most Stage I, II and III EC patients. We questioned why such an intensive surgery was the standard when the "wait and see" approach might be more beneficial. Perhaps the surgery should not be performed immediately post chemotherapy and radiation, but rather only if there is a local recurrence? Dr. M. said that question is a common one and the research continues. Dr. M. said that statistically, if surgery is performed immediately after chemotherapy and radiation, the odds are 70% that there is still viable cancer. He indicated that after over a year of being N.E.D., those odds improve to 30%. How accurate that is, we don't know, but it sure sounded good.

After our lengthy discussion, Dr. M. left the ball in our court. The three options presented to us were:

1. "wait and see" - do follow up PET/CT scans and endoscopies every four to six months and watch for a recurrence

2. "lymph node dissection" - remove the questionable supraclavicular lymph node and biopsy it

3. "the whole thing" - perform the esophagectomy as well as the lymph node dissection

In the end, we picked Door #1. With bated breath, we will wait and see. And treasure every moment we do have ... something we should do all along anyways. Dr. M. reassured us and told us he thought it was a "wise decision." He tried to put our minds at ease and told us that if E. does not have the surgery and the cancer spreads, it would NOT be because he didn't have surgery. If the cancer has spread, it has probably spread already. Those microscopic cancer cells were probably hiding and lying in wait all along.

The other part of facing an esophagectomy that is not often discussed is the psychological part. Many people are convinced that having the surgery is their only chance for longevity. Without the surgery, they're continually anxious and worried. Is the cancer still there? What if it comes back? What if I didn't do everything I could when I had the chance? As Dr. M. put it, if you can't sleep at night without the surgery, then we need to seriously consider that aspect too. (On the flip side, having an esophagectomy is not without psychological effects either.) So, while the decision has been made to not have the surgery at this point, a variety of factors could change that. Dr. M. is willing to go ahead with the surgery if E. changes his mind too. Dr. M. also offered the option of a second opinion with one of the seven thoracic surgeons at MD Anderson, which we declined. We are very comfortable with Dr. M. and have great respect for his knowledge and experience.

Both Dr. M. and his physician's assistant reiterated what a difficult decision we were all faced with. They remembered us from our first meeting, when we had a three-month old Peanut with us and I broke down in tears. How far we have come since then. As E. and I discussed the most recent crazy turn of events, we reminded ourselves that there were hundreds of people right here in the hospital today that were wishing and praying they were in our position. We are so thankful to be counting our blessings, craziness and all.

S.