Uneventful Night

I spoke to E.'s ICU nurse a little bit ago. She described E.'s night as "uneventful." Uneventful is good. He was able to catnap on and off. He got the CT already, but those results are not yet available (meaning the nurse can't share that with me). The doctor has not yet been in.

The pain is, well, painful. On that 1 to 10 pain scale they use, E.'s consistently at a 7. Since he is not one to complain and tolerates pain better than most people I know, 7 is huge. The nurse is encouraging him to push his morphine button. I'm not sure if he's trying to avoid the meds (we all know that just getting E. to take a Tylenol is no easy feat) or if he's simply forgetting that the button is there. In any event, pain is no good. I'm hoping that gets a little better under control for him.

Made it through surgery

After about 3.5 hours of waiting (essentially about 3 hours too long for all of us in the waiting room), the neuro surgeon came out and proclaimed, "He did great." The neuro surgeon was able to remove both tumors, but like he told us before, some cancer cells would remain. He identified the masses as "adenocarcinoma," which is the type of cancer E. had in his esophagus. So, again, all fingers point to these tumors being a metastases of E.'s esophageal cancer. Once the pathology is complete, we'll have a definitive answer. If the tumors have esophageal cells in them, it will confirm what is suspected.

As a side note, mets to the brain is more common for certain cancers than others. For example, lung cancer and myeloma sometimes metastasize to the brain. Esophageal cancer on the other hand? 1.5%! It is not that esophageal cancer doesn't metastasize to other parts of the body. It does. But it commonly metastasizes to other locations like the lungs or the liver. Only 1.5% of esophageal cancer patients have metastases to the brain! (I claim no responsibility for the accuracy of these statistics. I just happen to come across this interesting one while googling things I probably have no business googling.)

Anyways, the neuro surgeon indicated that E. would be in recovery for about thirty minutes and then would be transferred to the ICU where we could see him. As they wheeled him down the hall, I was able to hold his hand and talk to him. In our ride down the elevator, he was trying to pull out his nasal cannula for oxygen and was attempting to pull off the gauze bandages on his head. He was not a happy camper. One comment was repeating over and over ... and I quote, "I don't need this shit!"

Once E. was settled in ICU, we were able to take turns visiting with him. He looked much better than I expected. His entire head is covered in white gauze bandaging, from his eyebrows to his ears and up. His coloring was good and there wasn't nearly the swelling I thought there would be. He's moving his arms and legs, he sees, he hears and he's talking. And he's complaining of one badass headache!

He's got one of those push buttons to self-administer morphine, and despite us telling him that it administers a maximum of once every fifteen minutes, he's pushing the button every few seconds. He is in mass amounts of pain. I am hopeful they'll be able to get that under control a bit more as I hate to see him so miserable. He alternates from being a butthole to apologizing for being a butthole. "I heard I was a butthole." "I'm sorry I was a butthole." "I am not a butthole." Only his language was a lot more colorful. For the most part, he is very coherent. He did ask the same questions over and over, so I gave him the same answers over and over. Occasionally, he would shout out some random comment out of nowhere that would catch me off guard. Oh, and he is convinced someone fed him beer. At first I thought I misunderstood him, but after he repeated it several times, I asked him why he thought that and he said, "Cause I can taste it!" I've had cherry flavored meds and bubblegum flavored meds, but beer flavored meds is a new one for me.

He will continue to be monitored in ICU for the night. Around 4:30 am he will receive another CT scan to check for swelling and abnormalities. The doctor will review the CT scan and check on E. tomorrow. There is a possibility that E. could be transferred to the floor as early as tomorrow, but he will most likely remain in ICU for another day. He's only allowed two visitors at a time for a few minutes each hour. To keep him from getting over stimulated, we're asking that visits be limited to family members this first day (and no visits are allowed between 6:30 am - 8:00 am and 6:30 pm - 8:00 pm). He's on the first floor ICU and there is a waiting room directly outside for anyone who would like to visit or check on him. Someone will undoubtedly be there with the up-to-the-minute update.

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.