Home Sweet Home

Monday turned out to be a long day of waiting.

We waited for someone from the neuro surgeon's office to confirm E.'s discharge.

We waited for the diabetic trainer, who gave us 1/2 of the training we needed, and then said she'd return for the remainder since doing it all at once would be "overwhelming."

We waited for the medical doctor/hospitalist to give the "official ok" for discharge.

We waited for the diabetic trainer, who gave us the rest of the necessary education.

We waited for the medical doctor some more.

And some more. And some more.

We were thrilled to finally get the news that we could go home.

Then we waited for the nurse to remove E.'s port access.

We waited for all the discharge paperwork.

We waited for a wheelchair.

And then we were finally on our way!

Last stop: pharmacy. And guess what? We waited there too.

At the end of the day though, life was good. E. was at home. He sat in his recliner in the living room, watched some tv, visited with his dad and the kids, and ate some dinner.

He then got his handful of various medications and got situated in his spiffy circa 1970's hospital bed. Something still wasn't right though. Ahh yes, he was missing the remote controls. So, with the tv on and the remote controls in his hands, E. was soon in slumberland.

Sunday (8/29) News

There really isn't any new news.

E. continues to make progress. He did several laps around the floor today, as well as his physical therapy exercises. His medications have been modified a little. He took a shower and was able to clean his head and incision area a bit. Overall, he simply looks a lot better. A lot more stable. A lot more oriented. A lot more "with it."

We've decided a hospital bed would probably be beneficial at home, at least temporarily. We have a tall log bed and there was concern about him getting in and out of it. E. is also sleeping pretty elevated as to keep the pressure off of his head. A hospital bed will make that all easier, so one is being delivered to the house tomorrow. A 3 in 1 shower chair/beside commode/toilet support is also being delivered. I know some of you are jealous, so E. promised to loan it out once he is done with it. Go ahead and submit your name for the waiting list.

We have yet to hear back from the Diabetic Wellness folks to give us the Insulin 101 class, but we are hoping that will happen tomorrow morning. Then, fingers crossed, we'll be able to go home.

Hurricane Earl may be swirling around out there, but I'm tellin' you what ... our E. is a much bigger force to be reckoned with!

In Pictures

He doesn't look half-bad bald.

The swelling has really gone done in his right eye,

although we are told that swelling and discoloration can come and go.

And could get worse before it gets better.

A little better picture of the side view.

I guess "better" is all relative when you're looking at these kinds of pictures.

The front incision with 19 staples.

See the globby blood blobs we were talking about?

And the back incision with 16 staples.

A little "cleaner" looking.

The girls are teasing him . . .

He's bald and he's on steroids,

now all he needs is an earring. :)

Discussions re: Discharge

The hospital doctor did come in and confirmed that the blood clots are in the superficial vein of the arm, so that is good news. (If it had been a deep vein thrombosis or DVT, some sort of filter would have had to have been surgically placed since E. can't currently take blood thinners.) Warm compresses should help with the discomfort. E. was also advised not to be overly active with is right arm or lift anything heavy.

The hospital doctor also felt like E. and I could receive some "diabetic training" prior to discharge, which would allow E. to come home. We would learn more about monitoring his blood sugars and administering the right doses of insulin (regular insulin and long-acting insulin). The doctor has placed orders for that training, but I'm not sure when that will happen, or if a "diabetic trainer" is even available over the weekend.

Saturday (8/28) Update

E. had a decent night's sleep, but is still groggy. It is going to take a long time for his energy levels to come back up, and I think the extra sleep can only help him heal.

We still haven't seen a doctor regarding the blood clots, but heard a nurse mention that there were many tiny SUPERFICIAL clots. I expressed my relief, but she quickly pointed out that she cannot read any tests, nor provide any results. We would have to wait to hear from the doctor. E.'s arm, from the tips of his fingers to his elbow, is significantly swollen. It is also very tender to the touch.

E. took a lap around the entire floor again and seems to be getting more steady on his feet. When we returned to his room, he was ready to take a shower. He was able to get cleaned up (although neither of us felt comfortable washing his head, so the globby blood blobs remain). He brushed his teeth and combed his hair. Wait, strike that last part. He has no hair. :) The whole process really left him winded though. No sooner that we had got him back into bed, that the physical therapists arrived. Out he went for another walk around the floor. Then he had to do various exercises to help improve his balance (which has already shown an improvement from yesterday). Needless to say, he quickly fell asleep when he was done. The physical therapists did not feel like a rehab facility was necessary, but did recommend outpatient therapy (perhaps beginning with in-home therapy the first couple of weeks).

There have been a few small discussions regarding discharge planning. In terms of his head, he'll be ready to go home within the next few days. The problem that may keep him in the hospital though are his blood sugar levels. The steroids really wreak havoc on those levels. Although the steroids are slowly being tapered off, he'll still be on them for the next ten days or so. If he needs to remain hospitalized due to the blood sugar levels, we are going to request a transfer to a rehab facility. We are hoping that it would be quieter at a rehab facility than here in the hospital and he'd be able to get more rest. Everybody knows how hospitals have to be the worst place ever to actually sleep and rest. If there is a possibility that we can be educated on the insulin and administer it ourselves at home, we would prefer that.

Blood Clots

Remember the 45 minutes of pain E. was in last night after receiving his Dilantin? Well, maybe the blood clots were part of the problem! His right arm is swollen and has some discoloration. He has complained numerous times about the pain in that arm, but it definitely hit an all-time-high last night. Anyways, this afternoon, they finally did an ultrasound on his arm and we are told there are "multiple blood clots" in his arm. We are assuming they are superficial as he was told to keep warm blankets on his arm until the doctor reviews the ultrasound in the morning. I'm not sure what can be done since he cannot take blood thinners due to his brain surgery (they won't even flush his port with Heparin which is what the usual procedure is). Hopefully the doctor will just say that the blood clots will resolve themselves. (On a positive note, E. is now taking the Dilantin in oral pill form.)

E. was able to take another stroll around the floor, even at a quicker pace than this morning. It sure zaps his energy though and he's been dozing ever since. I am going to encourage him to take an evening walk before bedtime as the physical therapist recommended getting up and walking three times a day. E.'s personal walker was also delivered this afternoon. Anyone up for a little episode of "Pimp My Walker"? Just think of the possibilities. :)

A Walk(er)

E. was able to take a lap around the entire fourth floor with his walker. His walker!!! Bwahaha! I told him I'd get him a basket for the front of it (the girls think it needs a bell too). He told me to kiss his a$$. Can you believe he would say such a thing? :) The physical therapist didn't feel like a rehab facility would be necessary either, but did think that outpatient physical therapy would be beneficial for him. As she explained to us, because of his brain surgery, where he thinks is center is not really center. He seems to be having the most trouble with his balance and physical therapy can really help with that.

The stroll did tucker him out some and he's back asleep now. Like the physical therapist explained, he is going to get exhausted quickly while he is healing. His body is using lots of energy to try to heal his brain (and his high blood sugar levels are making his body work even harder), so any extra energy expended is most likely going to exhaust him. We plan on at least a couple more strolls around the floor today.

The progress he is making is quicker than I would have ever thought. This man is amazing. (You probably already knew that.)

S.

Friday Morning (8/27) Report

The transfer to the regular room went smoothly. (Room #478 just happens to be directly across from the nurses' station. Hmmm . . . I wonder if that was a coincidence or if that is where they put all their flight risks?) About the time we got him settled, he had a hankering for cheese pizza from JJ's Pie Company. The girls quickly fulfilled his request, for if we hadn't there's no telling what the little escape artist would do. We certainly didn't want to find him shuffling down the street in his hospital gown, with his hinnie feeling the cool breeze of the night air. No sooner than they ordered the pizza, he proclaims, "A bean and cheese burrito from Jimboy's sounds really good about now." I figured by the time we got any food to the hospital, his craving would be over and he wouldn't even eat a bite. He proved us wrong! Two slices of cheese pizza went down the hatch lickity split (no beer to wash it down with though, much to his disappointment). And it never even threatened to come back up. I have a feeling that burritos will be on today's menu.

Yesterday when the hospitalist (a doctor that makes rounds for the hospital but isn't E.'s regular doctor or anything) visited, he mentioned that once E. was discharged from the hospital, he would be transferred to a rehab facility. That was the first we heard any mention of a rehab facility! E.'s regular medical oncologist visited this morning and also mentioned a rehab facility. We chatted about it a bit, and I'm really not thinking it is going to be necessary. E. is eating and drinking on his own, as well as going to the bathroom. He has great strength and movement. He is a bit wobbly on his feet, but I think that will get better each day. The plan is to get him up and walking today.

E.'s medical oncologist also reiterated how chemotherapy isn't always very effective through the "blood brain barrier." He explained that the brain really doesn't like toxins up there and does a good job keeping them out. Therefore, tumors in the brain are most often treated with radiation, although occasionally, some chemotherapy has been helpful as well. Since E. just received a clean PET/CT scan in mid-July, he doesn't feel like there are any other recurrences. We "just" have these two spots in the brain to deal with. Once again, he is willing to coordinate with E.'s doctors at MD Anderson and follow their lead, for which we are appreciative.

E. was due for pain meds again at 8:00 p.m. At 7:15 p.m., he was uncomfortable. At 7:30 p.m., even more so. His pain level kept climbing. By the time the nurse finally brought his pain meds at 8:15 p.m. (after a brusque request from me), E.'s pain level had climbed back up to an 8. Once the meds took effect, he was much more comfortable and peaceful. He's allowed to take his pain meds every four hours, but has declined each time they have been offered. It is now almost 8:00 a.m. and he has yet to need pain meds again. The best part is that his pain level has remained at a 2.

Since E. is now able to take oral medications, he is receiving his diabetes medications and his steroids (Decadron) orally. He is still having to get insulin (regular insulin during the day and long-acting insulin at night) to help balance out his crazy blood sugar levels caused by the steroids. He also receives Dilantin (an anti-seizure medication) through the IV in his wrist. I guess this medication is very caustic to the veins and burns intensely. When it was administered last night, it probably took 45 minutes for the pain to subside. E. was miserable and cursing up a storm the entire time. We are hoping he can take the Dilantin in oral form soon too, so that will no longer be a problem.

Regular Room

E. made it out of ICU and into a regular room!

He's no longer tethered to an IV pole or a monitor. He sat in a chair while he ate dinner and actually managed to get down a 1/2 of a turkey sandwich. Oh, and E. is especially proud of the fact that his plumbing is still working.

The nausea seems under control. The Vicodin is working great, but I think he needs it about an hour sooner than he can get it. That pain level climbs until it is finally time and then it takes awhile to get in the system and be effective.

The neuro surgeon visited E. in ICU right before he was transferred. He said he was pleased with E.'s progress and how everything is going. (E.'s surgeon from MD Anderson in Texas also called to check on him.)

I'm hoping he'll be able to get a good night's sleep.

(Room #478 for those who want to visit tomorrow or in the next few days.)

Afternoon Update (8/26)

The physical therapist came and E. was able to get out of bed. He's wobbly on his feet, but had good strength. He sat upright in a chair for about thirty minutes, and avoided nausea the entire time. He brushed his teeth, washed his face and got a clean gown. He even got one IV (his artial line) and his catheter removed (which is allegedly not such a pleasant experience).

E. ate a whole little container of applesauce for lunch as well as a cup of soup (well, the broth part of the vegetable soup anyways). He was then able to take some Vicodin (pills), which seems to have helped with his pain immensely. Before he fell asleep, I asked what his pain level was and he told me he wasn't having any. Yippee! He is now snoozing peacefully.

A radiation oncologist (filling in for E.'s regular radiation oncologist, as she is out of town) came to visit with us. He explained that either radio-surgery or radiation would probably be in E.'s near future. I asked about the "lifetime maximum" amount of radiation that we had frequently heard about and he clarified that different areas of the body have different lifetime maximums. So, just because E. received radiation in his esophagus and chest area doesn't mean he can't have radiation in his brain. When I inquired about chemotherapy, he said he wasn't sure because chemotherapy often has trouble breaking the "blood brain barrier," which is why E.'s previous chemo probably killed all the cancer cells in his body *except* for in the brain. He was working under the assumption that the tumors were a metastases from E.'s esophageal cancer, but that still needed to be confirmed by pathology (he returned later after checking with the pathologist and the preliminary report does confirm that, although the final report is still out). Unfortunately, he pointed out that when a cancer metastasizes to one place, it is not uncommon for it to metastasize to other places, or even come back again where it started. He sounded much like E. when he said, "I'm sorry it happened, but it's just another bump in the road." Then he added, "You just gotta roll with it."

At that, E. gave me a look that said, "I told you so."

Thursday Morning (8/26) Report

It was another "boring" night. I like boring. :)

E. was able to sleep a little bit more, which I think helps.

He's still on the Morphine because the Demerol shot can only be given every six hours, and he was needing something more for the pain after about four hours. If he can start eating, he can begin taking oral pain medication (pill form), which we are told works better to control the pain after brain surgery than IV meds. They've got his nausea under control with meds, but he hasn't eaten anything other than the 1/4 of a saltine cracker he ate yesterday.

They removed his dressings today, and WOWZA! Those staples and scars are some doozies. Good thing chicks dig scars. Or at least this chick. His right eye is pretty swollen today and turning some nice shades of black and blue. The nurse said that is very normal, and his other eye may do the same. She said all of it may get worse before it gets better.

(Not a great picture with the cell phone, but it gives you an idea.

I know you can't see it well, but there's the stapled incision in the front,

and also a matching stapled incision in the back -

which is less visible in the photo.)

The neuro surgeon's nurses were in this morning and it sounds like there is still a possibility E. will be transferred to a regular room today. Not yet sure if he'll be on the neurology or the oncology floor. If the transfer happens today, it probably won't be until later tonight though. In the meantime, we're hanging out in ICU. We have a new day nurse and I am thrilled. While I have loved the night nurses, I hope we never see yesterday's day nurse again (I'll be kind and not say anymore about that).

And that's the "boring" report for now.

Still in ICU

E.'s day in ICU was fairly uneventful. He has catnapped throughout the day. His eyes were only open for a few seconds here and there as he says the light hurts his head. He is still in severe amounts of pain, although he seems to be more inclined to push his morphine button now. His pain level has gotten as low as a 4, but seems to stay in the 5/6 area. Nausea as been a problem. He has vomited several times. Can you imagine the pain that vomiting puts on your head? Can you imagine the pain that vomiting puts on your head after brain surgery? Holy owie, batman. Since many people are sensitive to morphine, there is a possibility that is what is causing the nausea. So it sounds like they are going to remove the morphine IV and switch to giving him shots of Demerol and Phenergan in the hinnie.

The steroids were discontinued temporarily because of E.'s erratically high blood sugar levels. Because he seemed excessively tired and groggy though (thought possibly due to the swelling of the brain), the steroids were restarted. He does seem to be more alert with the steroids, but his blood sugar levels pay the price. E. is definitely coherent. He knows who all his visitors are and responds appropriately to questions. There's no question that the ole E. is still there . . . the cuss words are flying and so are the wise cracks.

The neuro surgeon finally came in at 8:30 pm. E. opened up his eyes, nodded an acknowledgement and put out his hand to shake the doctor's hand. When the doctor asked him to lift his arms and wave them in the air, E. complied. He then commented, "No dancing yet," which got a grin out of the doctor. The neuro surgeon informed us that the "CT scans were good." I asked about the grogginess, which he said was totally normal. He said that lots of rest is good right now. I inquired if E. would be transferred to a regular room tomorrow and his answer was, "We'll see how he's doing tomorrow."

Until tomorrow then . . .

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.

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.