More Questions Rather than Answers

Today we met with the local radiation oncologist. We had a list of questions for him, most of which he couldn't give us concrete answers to.

* Is the growth in the brain cancerous? It is hard to tell. It could be. It could be scar tissue. It could be necrosis. Because it is in the brain, it is not easy to figure out. You can't biopsy it as easy as you could if it were in other parts of the body.

* If it is determined that the cancer is growing back, is surgery a possibility again? Is cyberknife a possibility again? Yes, they are both possibilities. Of course, both are high dependent on various factors, such as the size of the growth and where the growth is exactly located.

* What about chemotherapy? Is that an option? There are very few drugs that penetrate that blood-brain barrier, but that is something we need to discuss with the oncologist.

* And what about whole brain radiation, which the "brain lady" in Texas implied would be the next step? Dr. T. said that whole brain radiation is really saved until it is absolutely needed because of the fact that it radiates the whole brain, healthy cells as well. The long-term impact of neurological and cognitive functioning is significant.

* If we know there is growth, why aren't we treating right now? Why are we waiting? A few weeks isn't going to make a difference. It is better to make sure we need to treat than to treat something we didn't have to (especially if we're talking whole brain radiation).

Dr. T. and his medical student then reviewed the CD of the MRI we brought with us from Texas. They agreed that there was "more fuzzy white stuff" that wasn't there before. "Fuzzy white stuff" is not good. But it is also not clear. The "enhancement" around the cavities (where the tumors once were) were previously a well-defined border, which is more indicative of treatment effect. When there is new cancer growth, they are looking for more "nodule" looking growth. "Fuzzy white stuff" is neither. It is not a well-defined border, but it is not clearly nodular either.

Of particular concern was the proximity of the "fuzziness" in the front of the brain to the left ventricle of the spinal cord. If this is in fact cancer coming back, there is serious worry about cerebral spinal access. Thankfully, right now there are no signs of this (physically or medically), but if any signs present themselves, an MRI of the spine as well as a lumbar puncture (or 3) would be required to determined if the cancer has "seeded" into the spine. If we come up against that, in Dr. T.'s words, "we're in big trouble."

Dr. T. commented what a unique case E. was. Most Stage IV Esophageal Cancer patients aren't around three years later cracking jokes in his office. Rarely does esophageal cancer spread to the brain. Other places, yes. The brain, no. And if Dr. T. were made to guess where E. would have a recurrence, he would have said anywhere in the brain BUT the two areas around the cavities. After the two tumors were surgically removed, they were treated with cyberknife and Dr. T. was confident that nothing would grow back in those areas ever again. But here we are. There is re-growth in those exact same two spots. As unique as E.'s case is, that uniqueness has served him well. He is defying the odds. He makes people stand in wonder and awe.

As it stands right now, we're sort of in a "watch and see" mode. E.'s case will be presented to the brain tumor review board on January 11th to receive more input. He'll meet with the local neurologist on January 10th and he's scheduled for that follow-up MRI on January 16th. He'll then meet with the oncologist on January 19th, and I'm assuming there will be a follow-up with the radiation oncologist as well.

As far as E.'s feeling, he's feeling pretty darn good. He's getting occasional headaches, especially when the weather changes or the fronts move in. His balance is a tad off, as is his short-term memory (that's his excuse anyways, although it still might be selective hearing ... haha). Speaking of hearing, his hearing has been effected, and unfortunately it is not just selectively. Once in awhile, he gets fatigued, but it's nothing an afternoon nap can't help. And hey, retired folk are supposed to nap, aren't they? :)

Good News and Not-So-Good News

Since our early morning appointment with Dr. A., the medical oncologist, was cancelled, we were wondering how we could most quickly get the results of yesterday's testing. We headed over to Medical Records to get a copy of the PET/CT as well as the MRI. The MRI had not been signed off yet, so we couldn't get a copy of that, but we got a copy of the PET/CT in our hot little hands. A quick skim of the report told us what we wanted to know ... good news! "No abnormal FDG accumulation is identified in the neck, chest, abdomen, or pelvis."

We then met with Dr. L., the neuro oncologist (or "the brain lady" as we call her), to review the results of the MRI. First though, E. had to undergo a thorough neurological exam. Dr. L. is concerned about E.'s seizures and believes they are increasing in frequency (his seizures are not what you'd typically think of a seizures, but rather, they are fleeting moments of missing time, feelings of strangeness or just being "off"). Because he is on the maximum dose of Keppra (anti-seizure medication), she is adding another medication called "Vimpat" in an attempt to minimize these seizures. Dr. L. then reviewed the results of the MRI with us and showed us the images on the computer screen. As soon as I saw the side-by-side comparisons (June's MRI and yesterday's MRI), my stomach dropped. There were changes. I could see it. And in case I wasn't sure about what I was seeing, Dr. L. clearly stated, "There are changes." She explained that there is "more enhancement" around the surgical cavities in both the front and the back of the skull (where the two tumors were removed). Things unfortunately aren't clear cut or black and white when it comes to matters of the brain. Questions remain. Is this "enhancement" a side effect from radiation? Or are the tumors growing? Big questions. No answers. Dr. L. recommended another MRI in four weeks to see if we can get a better idea of what we are dealing with.

We discussed coming back to Texas for the MRI or remaining local. At the end of the discussion, and at this point, I think we decided to remain local. If the tumors are in fact growing, treatment will occur locally and so it's important to get the local radiation oncologists back in the game. We will FedEx the MRI results to Dr. L., who will review them and confer with E.'s local team. In the end, we'll come up with the best game plan possible. Or, if a miracle happens, all that enhancement will disappear and no game plan will be necessary. That would be good. Really good.

Testing Day

Our day began bright and early at 7:00 a.m. when we showed up for E.'s first appointment, only to be immediately greeted by some confusion. E. couldn't even so much as check-in, as we were told his account had been "put on hold" because there had been no insurance approval for this latest round of tests. We were told to have a seat while they tried to work things out. After an hour, the apologetic front desk clerk informed us that he couldn't reach anyone at the business office and suggested we walk over ourselves. We made the long trek to the business office, where we were informed of exactly the same thing: we did not have insurance approval. Apparently, E.'s insurance was denying further testing in Texas, claiming that testing could be done locally instead. Even though it was now 8:30 a.m. in Texas, it was only 6:30 a.m. in Nevada, which meant that the insurance folks were probably still snoozing and most certainly not in the office yet. A variety of people left messages stating our claim to the insurance company; the business folks, the testing folks, the doctor's representatives and of course, E. himself.

Surprisingly, at 8:13 a.m. Nevada time, the helpful gentleman at the MD Anderson business office called us back ... we had insurance approval! We headed back over to Nuclear Medicine to begin the PET/CT process. Unfortunately, the entire schedule was thrown off due to the delay, but we were thankful they were still willing to squeeze us in where they could. We were at their mercy though and settled in for the long wait. It was 11:35 a.m. Texas time when E. began his first appointment of the day (originally scheduled for 7:00 a.m.). From here on out, it was surprisingly smooth sailing. The PET/CT, followed by labs, and then the MRI. Even with the unexpected morning delay, we were still done before 5:00 p.m. Woohoo!

We had one more kink thrown in our plans as well. Dr. A., the medical oncologist, was called out of the office and wanted to reschedule our appointment to next week. Since that's not really a feasible option for us, we'll have to settle for a phone consultation. When, we don't know. We're hopeful we can still get the PET/CT results from someone tomorrow, because I might just be a crazy (crazier?) lady if we have to wait indefinitely.

You'd think this scanning/testing/waiting for results process would get easier. Physically, it does. We have that part down to a science. Emotionally, it doesn't. It simply doesn't.

Peanut and Dad

Peanut loves to ride on dad's shoulders.

And pull his hair.

And tug on his ears.

And yank off his glasses.

It's a barrel of laughs.

For everyone but dad.

(P.S. Like how it looks like Peanut has a big part in his hair?

That's really just where he cut that chunk out!)

Grandpa Update

Grandpa had his post-op appointment with the surgeon and is healing up nicely. He is still sore, but that is to be expected and will take time until he's back to normal.

Grandpa also had his consultation with the oncologist. Our research proved correct. Grandpa's cancer was Stage 2 and surgery is the only recommended treatment. No radiation or chemotherapy is recommended at this point. He'll follow-up with scans every three months for a bit and then every six months. He'll also get a follow-up colonoscopy in a year. Hopefully everything will remain disease free.

On the E. front, he's scheduled for his scans on December 14th in Texas and the subsequent doctor appointments on the 15th. All prayers, thoughts and positive mojo welcomed.

Grandpa's Discharged

Grandpa finally got discharged today. He'll spend a few days with us recuperating but only because we have football on tv. (Seriously. That's what he told us.) He's determined to drive the two hours home, even though the doctor said he needs to stay with us for a couple of weeks. We'll continue to work on him and see if we can't talk some sense into him.

He had a few rough days in the hospital, throwing up and passing blood. He did require a blood transfusion, but so far hasn't needed another. They were able to remove all his drainage tubes and staples before he was discharged, so that was one less thing to worry about.

We were able to get the pathology report back yesterday. The tumor was a bit worse than anticipated, coming in at a T3. On a good note though, all of the lymph nodes tested negative, so it's a N0 and with no metastasis, it's a Mx. All combined, the T3 N0 Mx translates to a Stage 2. After his post-operative appointment with the surgeon in a couple of weeks, he'll meet with an oncologist to discuss any further treatment. From what we've researched though, it doesn't appear that chemotherapy or radiation is part of treatment for a Stage 2 colon cancer patient. It seems like surgery generally does the trick. Hopefully that's the case because grandpa has already made it clear that he's not doing "none of that other crap."

He's pretty sore, moving cautiously and slowly transitioning back to solid foods. It's going to take some time for his body to heal, but he seems like he's on the right track.

Grandpa's Surgery

Grandpa's surgery started over three hours late, but once it started, it was surprisingly quick. It took less than an hour to complete. They were able to do it laparoscopically, which should make healing quicker and easier. There is no colostomy bag at this point, although there is a slight outside chance (like 1%) that a bag could still be needed at some point in the healing process. The surgeon still couldn't tell us much about the stage of the cancer and said we'd have more definitive answers once the pathology came back (the actual tumor and several surrounding lymph nodes were sent to pathology). It is anticipated that the pathology results should be back about the time grandpa is ready to be discharged from the hospital ... at the end of this week, or the beginning of next according to the surgeon. Hopefully Grandpa will be able to transition to solid foods and be able to slowly start getting up and around a bit. Now if his blood sugar levels would cooperate, that would just be a bonus. Given all the possible scenarios, it sounds like things have really gone well so far.

Grandpa

E.'s dad, E1, visited with the GI doctor last week to address some suspected long-term side effects from last year's prostrate cancer and subsequent treatment. Turns out, it wasn't side effects from the prostrate cancer at all. It it an entirely new and ugly cancer beast ... colon cancer.

Just when we think we have a little cancer education under our belts, a new form of cancer is tossed our way and we have to start over. With colon cancer, staging doesn't happen until after a CT scan and after surgery. The CT scan was completed a couple of days ago, but it didn't seem to offer up much new information other than confirm that grandpa does in fact have colon cancer. A consultation with the surgeon left us with more questions than answers. There are just so many variables in this situation. We really won't know much until after surgery, which is scheduled for Monday.

Surgery could be laparoscopic. Unless it requires open surgery. His hospital stay could be one to three days. Or it could be two weeks. He may heal nicely. Or he could have complications due to his diabetes. He might be able to transition to solid foods over a period of days. Or he may require IV nutrition because of his current low weight. He could return to our home to after discharge to recuperate without any extra intervention. Or he may have to return to the wound clinic for daily wound care. He may have nothing but incisions (staples and/or sutures) to take care of. Or he could have a colostomy bag. It's all a bunch of "what if's."

So, we do what we do best ... we roll.

Haircut Appts

Peanut is now in the business of cutting hair.

If you'd like yours done before he's too famous, please call now.

Appointments are filling up fast.

Reflections

I've spent most of the week reflecting. Thinking back. Remembering. Sometimes it is hard to believe how much time has passed. Yet in other moments, it seems like it was just yesterday.

Last night at dinner, I read aloud the blog posts from a year ago. I was immediately taken back. When E. asked me to describe in one word how that time period was, I replied, "scary."

Even thinking about it now, I can get that feeling in my stomach. I can remember that first moment when I truly realized that something wasn't right on that Friday night. How suddenly my hindsight became clearer and things we had been excusing away for the previous couple of weeks weren't right either. That eerie and quiet trip to the emergency room and then the long wait for tests, scans, doctors and specialists. Finally, the news that we dreaded but that we both secretly suspected ... brain tumors. The cancer was back and it was in his brain.

I remember the following days of trying to figure out what exactly this meant and where we went from here. Friends and family rallied around us and picked up the many pieces so I could be at the hospital. I don't know what we would have done without them. Decisions had to be made and a plan had to be decided on. I felt like the whole time I was holding my breath. Once we had a plan for surgery I felt like I could exhale a little bit, but then came surgery. Brain surgery. It all sounded so ominous. On the outside, E. and I both held it together well. We knew we had to be strong. There were people counting on us. We were counting on each other. There were private moments though, moments between the two of us, when those walls came crumbling down. We were scared.

Yet, here we are a year later. E.'s got scars on his head as reminders of what he's been through. He's battled with some episodes of brain swelling (we're assuming) and he still occasionally gets some intense headaches. He continues to take the anti-seizure medication as supposedly the seizures are still present, although we've been fortunate to never witness anything we've imagined as as stereotypical seizure. His short-term memory can still be a bit fuzzy (particularly if he's overly tired or not feeling well), but considering the long list of potential side effects from not only the brain surgery but also the cyber-knife radiation treatments, I'd say he's fared extremely well.

He takes pleasure in his girls and spending time with them. He enjoys watching the boys' sporting events. He delights in Peanut's daily antics. He's hitting the gym with some regularity ... a little cardio, some weights and his beloved sauna. He cooks up a storm and keeps us all fat and happy. He watches his ESPN, his CNN and his history channel (that is when Peanut doesn't steal the remote before him and then he's stuck watching PBS or the dreaded Sponge Bob). He's looking forward to football season, both for the Minnesota Vikings and the UNR Wolfpack. And, he also wants to get back to work. Specifically, he wants to start working on his clinical hours for his LCSW (For those of you familiar with LCSW requirements, you know how this works. For those of you not familiar, let me just say, the clinical hour requirement is astronomical.). He worked so hard on his MSW and he's got so much experience and talent, it would be a shame not to use all of it. He'd love to work with Veterans, but is open to other areas as well. Anyways, if you hear of somewhere who could use someone like him, give him a ring.

I'm so very grateful to be where we are today. I love that man, scars and all.

Our Family

The wonderfully talented Alexa Appell of Little Things Photography

took these amazing family photos for us.

Have you ever tried to get 12 people looking at the camera,

including a 2 year old?

"Once upon a time ..."

Dad and Mom showin' a little Peanut love.

Love, Love, Love.

All around.

Pool Time

Peanut loves to play in the water,

whether it be at the beach, the pool or just the bath.

He frequently grabs his swimsuit

and asks to go to the beach or the pool.

In rare event that we ask first,

"Do you want to go swimming?"

The answer is always the same ...

"Yes, pweeeeze."

Following by a big smile and lots of jumping up and down.

He is so darn cute.

Good Mix

Each year since 1990, U.S. News and World Reports comes out with special report, ranking hospitals across the nation in a variety of specialities. It was one of the reasons, one of the main reasons, we found ourselves headed to Texas when we decided to seek out further treatment after E.’s esophageal cancer diagnosis. At the time, M.D. Anderson Cancer Center was ranked as the #1 hospital in cancer care in the nation. It was ranked #1 in 2011. It was ranked #1 in 2010. And in 2009. And in 2008. And 2007. Matter of fact, M.D. Anderson has consistently been named one of the top two cancer hospitals for all 22 years of the survey. Pretty impressive, eh?

Recently I came across another publication from U.S. News in partnership with Castle Connolly Medical Ltd. Rather than rank the best hospitals, this report ranked the best doctors, again in a variety of specialities. Curious, I searched out the names of E.’s doctors, wondering if any of them would make the prestigious list. Doctors listed in the “U.S. News Top Doctors” are estimated to be in the top 10% nationally. Remarkably, some doctors were given even more recognition with a special icon by their name, denoting that they were estimated to be among the top 1% in the nation in their speciality. The top 1%. Holy smokes.

Oh yeah, back to my search. First, I searched E.’s surgeon. Mind you, E. never got to the point of having surgery, but we really like his surgeon and he’s stayed on E.’s case even though surgery has been off the table for a long, long time. Sure enough, he’s on the list. Top 10%. Then I searched E.’s neuro-oncologist. She hasn’t been on E.’s case since the beginning, only joining after the brain tumors made their appearance. Again, her name appeared. Top 10%. Finally, I searched E.’s medical oncologist. Whoa. There he was. And with an icon by his name. A special icon. Top 1%. Top 1% in the nation.

Good hospital. Good doctors. Good guy.

Good mix, if I do say so myself.

Finally an Update

We haven't posted in awhile because there hasn't been anything to post. That's a good thing. E. finished his course of steroids, which seemed to do the trick as all the "funky brain stuff" improved. Based on that, we're assuming there was indeed some swelling in the brain and now it's gone. Good deal. The steroids did make his blood sugars go out of whack as expected and so in addition to his oral diabetes medication, he is still on the long acting and quick acting insulin shots. He of course is not thrilled with that set-up, but is managing. E. was able to wean off the one anti-seizure medication (Dilantin) and titrate on the other anti-seizure medication (Keppra). It was a surprisingly long and slow process.

But the bigger update is that E. had a PET/CT scan on Tuesday and a MRI yesterday ... EVERYTHING IS STABLE! "There are no findings to suggest recurrent tumor or metastatic disease."

The PET/CT scanned from the base of the skull to the thighs, while the MRI focused on the brain/skull.

The PET/CT was clear. Nothing lit up. Gotta love that.

The MRI looked very much the same as it did three months ago. The "enhancement" (the white area around the removed tumors that lit up) looked the same. As you may recall, at the time of the last MRI, we weren't sure if the enhancement was delayed treatment effect or if it was new cancer growth. We were in the "wait and see" mode ... waiting for three months to get a comparison MRI. Yesterday's MRI showed no change, which indicates the enhancement is in fact treatment side effects. Woot Woot!!! The "necrosis" (the dead tissue where the tumors used to be) is actually a bit smaller. When asked if these areas of enhancement and necrosis would change in the future, Dr. L. said that they may stay looking the same and she thinks "that will be the case here."

Next up ... repeats scans in six months. Yippee!!!

Some Park Action

In between days of snow or rain, when the sun was actually shining,

we took Peanut to the park.

He is such the stereotypical boy.

He loves to run and jump. Throw rocks and collect sticks.

Chase birds and squash bugs.

We travel with an assortment of balls ...

soccer, baseball, football, golf, tennis, basketball.

He loves to throw, catch, kick, hit, shoot ...

You name it, he does it.

(Except for talk, but that's a whole different story.)

Having a ball makes everything right in the world.

At least in Peanut's world.

Symptoms?

We met with the local radiation oncologist today to review the MRI from Texas and just to follow-up on things here. I was glad we had the appointment, because remember how the doctors in Texas said E. had to report any symptoms immediately? Well ....

For the past few weeks, E.'s been having more and more "symptoms" ... short term memory loss, right leg weakness, balance issues, headaches, irritability and fatigue. It has been slightly concerning. No, make that HUGELY concerning. In typical fashion, E.'s been brushing them off and I've been freaking myself out.

The radiation oncologist put E. through a series of neurological tests, which he seemed to pass with flying colors. That is, except for walking heal to toe in a straight line. Let's just hope he doesn't get pulled over for any field sobriety tests any time soon.

The radiation oncologist reviewed the MRI that we brought back with us from Texas. He actually liked what he saw. Matter of fact, he said that if E. weren't having any of these symptoms, he'd of said everything looked great and that he'd see us again in three months. He indicated that recurrences usually occurred in the nodules rather than the walls, and that the cavities where the tumors/nodules had been looked great. He agreed that there was more enhancement in the walls, but didn't think it looked suspicious at all. He also commented that the walls looked fuzzier, which would be consistent with a delayed reaction from the radiation treatment. He remarked that while this was on the outside edge of the timeframe for the delayed reaction, it still wasn't unheard of.

He also noticed some swelling, particularly around the post-operative cavities. Again, he stated that it could be delayed swelling from the surgical procedure itself and the subsequent Cyberknife treatments. The symptoms E. is presenting could very well be the result of the swelling that is currently present. In order to treat that swelling, E. is going to have to go back on a course of steroids. Unfortunately, steroids have a tendency to make people cranky. A cranky E. is a small price to pay to get rid of these symptoms though. And if it means swelling over cancer, we'll take it any day!

Oh, and do you happen to remember what steroids do to blood sugar levels? You guessed it. They make things all out of whack. E. is already back on the insulin at a minimum dose to try to keep things somewhat stable before they get too out of control. He is not a happy camper.

One Down, One Up

E. met with the family doctor today to go over some recent labs and such. He was thrilled to learn that he no longer has to take the insulin as his blood sugar levels seem to have finally stabilized. Not only is that one less med, but it also means that he doesn't have to get those daily shots anymore. Woohoo! But ... it seems as if his cholesterol level needs some help. So, he's on a new med for that. At least it's not a shot, right?

Two

Since two years has passed since E.'s diagnosis, it seems only reasonable that Peanut is turning two. After all, he was born a few short weeks after we first learned E. had cancer. And yet, it doesn't seem possible. It doesn't seem possible that two years has already gone by. It doesn't seem possible that one precious little munchkin has brought so much joy to our lives in two years.

He looks thrilled about his birthday cake, doesn't he?

He was actually thrilled about the candles.

He blew them out with much gusto, just as soon as they were lit.

Then he blew them out again.

And again.

And again.

And again.

It was the highlight of the night, I'll tell ya.

Mmmmm.

Yummy.

His new ride.

As you can tell, he loves it.

His legs are just long enough so that his feet reach the pedals

They are not long enough though that he can actually pedal,

which causes great frustration.

Thankfully, there are many volunteers who can push him around.

I realize he may look like he is throwing a gang sign here.

What he's actually doing is showing us that he's "2."

Yeah, he doesn't quite have that down yet.

We'll work on that.

Happy Birthday beautiful boy.

We love you Peanut

and are so glad you blessed our lives.

"Changes"

Today we met with E.'s oncologist.

The PET/CT looked good. "There is no abnormal activity along the esophagus. There are no enlarged FDG-avid nodes in the mediastinum, paraesophageal, axillary, left gastric, abdominal or retroperitoneal regions. Normal tracer activity seen in the liver, spleen, adrenals, or visualized bone marrow."

The MRI is questionable. "There is a decrease is size of the surgical cavity within the right frontal lobe. Marginal enhancement surrounding the resection activity is more prominent; however, still within the realm of postoperative enhancement. This bears close followup to exclude recurrent tumor."

E.'s oncologist said there are definite changes in E.'s brain, which is a possible consequence of surgery, but could be a possible consequence of recurrent cancer. He recommended that we consult with a neuro-surgeon to see if any intervention is needed.

We then met with a neuro-oncologist at the Brain and Spine Center.

She reviewed E.'s history and agreed with the conclusion that E. was probably having focal or partial seizures rather than generalized seizures. She found it interesting that E. is slowly titrating on the Keppra and then will be slowly weaning off the Dilantin ... in her practice, they start and stop those meds abruptly.

She reviewed the MRI. While the cavity where the front tumor was is smaller, the walls are thicker. And they are more "enhanced." "Enhanced" means brighter. So, looking at the MRI, the walls around the cavity are thicker and are glowing much brighter. As you may recall, when you're looking at an MRI, you really don't want anything to glow brightly! The neuro-oncologist did say that sometimes "enhancement" is caused by healing from radiation and the "time is right for radiation induced changes." She pointed out some white cloudy areas around the cavity, which she explained could be swelling caused by a tumor.

She really didn't have anything definitive to say. She summarized by saying, "Based on my assessment, 1. Right now, I do not know what's in there. And 2. I am going to need to repeat the MRI in two or three months. If it is stable or improved, that will show that it is side effects from the treatment. If it is worse, that will show it is the tumor coming back." Furthermore, she stated that during that interval of time, if E. develops any symptoms such as vision trouble, increased seizures, headaches, disorientation, etc, he is to report them immediately.

We then got a call from the thoracic surgeon's physician's assistant. She wanted us to come over so they could see us before we left. She called the surgeon out of a meeting, simply so he could touch base with us. They had both reviewed the PET/CT and MRI reports and were full of optimism. Essentially, there is nothing that can be done about it right now anyways, so we are not to let it consume our lives. "Go, live life, enjoy .... and we'll see you in three months." It was just the pep talk we needed to end our visit.

Long Day of Tests

The day's original schedule looked like this:

7:00 am Chest X-Ray

7:30 am PET Prep

8:00 am PET/CT Injection and Localization

9:30 am PET/CT

11:00 am Appt. with Thoracic Surgeon

12:30 pm MRI Prep

1:00 pm MRI with and without Contrast

2:30 pm Labs

Things were cruising along just fine until 8:00 a.m. For the many of the tests and scans you undergo, there are specific instructions. The PET/CT is no exception. The folks called last night to confirm the appointment and go over the instructions. E. was to eat no food for six hours prior to the PET, but could drink water. He was instructed though to take all his usual medications. He clarified that he was supposed to take both his anti-seizure and his diabetes medications in the morning prior to the test. Affirmative.

Oops. He was supposed to take all his usual medications EXCEPT his diabetes medications. We should know that by now, but honestly as familiar as these tests become, sometimes they all kind of blend together and it's hard to remember which instructions were for which test. They sent E. to the cafeteria with orders to eat a high protein breakfast and drink lots of water. He was then to return to Take #2 of the PET at 3:00. So, basically, the morning appointments got shifted to the afternoon.

The one appointment that we had to cancel was with the thoracic surgeon. Since E. didn't have any tests or scans completed, there wasn't really anything we could discuss with him, unless we just wanted to chit chat. We were both disappointed as the thoracic surgeon and his physician's assistant are by far our favorites. They have gone way above and beyond in E.'s treatment and we trust them implicitly. The strange thing is that after that rogue malignant lymph node was found during our first visit to MD Anderson, surgery was essentially taken off the table for E. That means that E. really has no need for a thoracic surgeon to even be on his team. I think the surgeon and his P.A. must be kind of partial to E. too because they always want to see him too. The thoracic surgeon doesn't see patients on Thursday, but the P.A. said that they would consult with us by phone and make sure to meet up with us on our next trip to Texas.

E. didn't finish with his scans until almost 6:00. Whew. Is it bedtime yet?

Neurologist Appt.

We met with the neurologist, who decided that E. was probably in fact having seizures. The spikes in his EEG coupled with his self-reports of momentary bouts of dizziness and disorientation (lasting a couple of seconds at most and happening up to a few times a week) led her to believe that he's experiencing seizure activity. In order to be sure, he could be monitored for 24 hours a day in hopes that a seizure could be recorded, but there's a high probability that we wouldn't even be able to time things right and nothing would be documented. In the end, the odds are that it would just be a waste of everyone's time.

The anti-seizure medication (Dilantin) that E. is currently taking seems to be doing a good job keeping the seizures at bay, but the problem is that Dilantin isn't an ideal medication for long-term use. Long-term side effects can include dental issues (specifically regarding the gums) and bone disease (specifically weakening of the bones). Since it looks like E. could potentially be on anti-seizure medication for the long haul ... like twenty or thirty years! ... it's time to switch to a different medication. Enter Keppra. With these anti-seizure medications, it is not a simply as stopping one and starting another though.

E. will begin taking the Keppra by taking one pill each evening for five days, while continuing to take the Dilantin. He will then take one in the morning and one in the evening for five days. Then one in the morning and two in the evening. On and on it goes until he reaches three pills in the morning and three pills in the evening. Once he's reached that dosage and stabilizes there for a few weeks, we'll touch base with the doctor again. Then, after a couple of months, he can begin to wean off the Dilantin. It is quite the process.

Of all the anti-seizure medications available, it seems that people tolerate Keppra the best for long-term use. Approximately 15-20% of folks though seem to have increased moodiness and irritability. Cross your fingers that E. is in the majority, not in the minority for this statistic.

The neurologist was optimistic that the Keppra would be all that was needed to keep E. seizure free. She was not surprised that he was experiencing seizure activity, considering all that his brain has been through. There isn't really much follow-up needed other than monitoring the medication, and another EEG isn't even foreseen unless there are some drastic changes. The doctor did mention that in periods of severe stress or illness, E.'s seizures may increase in intensity or frequency. If that happens, there's another medication that he can take to help through those times as well.

Next up: Texas. It snuck up on us this time, but it's almost here again. All day of travel on Tuesday the 1st, all day of tests and scans on Wednesday the 2nd, doctors' appointments the morning of Thursday the 3rd and then home that evening. As always, positive vibes, good thoughts and prayers are appreciated.

Borrowed Time

It was two years ago yesterday that we first heard the word "cancer." When we were scrambling to find out everything we could about that horrible beast called esophageal cancer. When we were learning about PICC lines and ports, chemo drugs and radiation treatments, medical providers and insurance red tape. When we were discussing the possible need for feeding tubes, hospitalization, and palliative care. And when we were told "less than two years."

So, two years and one day later, E. went out to lunch with some guys from work. He was late and they had already ordered, so he mooched off a piece of pizza and some chicken wings. Pizza and chicken wings! Two years ago, we were talking about feeding him through a feeding tube! And certainly not pizza and chicken wings! When I picked him up, he was still a bit hungry and I was staaaarving, so he indulged me in all-you-can-eat sushi. What a combo, eh? Pizza, chicken wings and sushi!

We had some enjoyable conversation, awesome sushi and great entertainment. Anyone who takes a two year old (yes, Peanut will be two in a few short weeks ... gasp!) to a restaurant knows that they bring their own entertainment with them ... waving at strangers, spilling miso soup, retrieving Lego men from under the table, blowing bubbles in his drink, yelling "GOAL" loudly at the television with his arms in the touchdown position every time he sees a ball on tv (ANY ball - football, soccer ball, basketball), climbing in and out of our laps, and throwing his arms around our necks in tight bear hugs while giving us big, slobbery smooches. The best entertainment in the world, I'll tell ya.

We know others that have started this journey at the same time, or even after us that haven't been as lucky. It doesn't always make sense, but it makes us all the more thankful. The time that we do have, that all of us have, is dang precious. There are so many moments worth treasuring that I want to permanently sear in my brain for safe-keeping so they are never forgotten. It may seem like just another lunch with a rambunctious toddler to you, but to us, it is a beautiful life. A beautiful life that two years ago we weren't so sure we'd be experiencing.

From here on out, I guess E. is considered to be living on "borrowed time." Time that we will surely continue to enjoy every minute of.

S.

Referral to a Neurologist

I guess E.'s abnormal EEG isn't too much of an emergency as he got a referral to a neurologist and the appointment isn't scheduled until February 24th!

*** Edited to add: The neurologist called us back and moved E.'s appointment up to February 22nd. That really seemed like no big deal, until they added that E. has also been placed on the cancellation list for the "first available appointment." Hmmmm.

Abnormal EEG

E. was about out of anti-seizure medication, but has held off refilling the prescription since he figured he'd be weaning off them any day. When we still hadn't heard anything about the EEG results yesterday, E. began making the calls. It appeared as if the EEG results were "lost." To make a long story short, the results were eventually found and E.'s EEG was abnormal. Apparently, he is having seizures!

How can he be having seizures and we don't even know it? We're not sure. Perhaps the medication is keeping them from being visible? Are the sharp shooting pains that E. sometimes gets in his head possibly seizures? When E. occasionally gets the chills, could that be a seizure?

Since E. had a very short telephone conversation with the nurse (with Peanut running around in the background), we don't know a lot. What we do know is this ...

1. E. will continue on the anti-seizure medication. (Obviously.)

2. E. will need to see another doctor. (We're not sure what kind of doctor ... presumably a neurologist?)

3. E. will need another EEG ... this one without meds? (Again, we don't know the details, but supposedly something is being mailed to us.)

In the meantime, thank goodness for anti-seizure medication!

Visit with the Oncologist and EEG

E. had to stay up until midnight last night and then get up at 4:00 a.m. for his sleep-deprived EEG today. (I was supportive and stayed up until midnight with him. At 5:00 a.m., I opened one eye and said "You up?" When he assured me he was, I promptly fell back into slumberland. Support only goes so far, especially when precious sleep is at stake.)

The EEG itself was painless. E. laid on a bed in a quiet and darkened room while the EEG tech attached a bunch of discs (electrodes) to his head with a sticky paste. Those electrodes are then hooked to wires which run to a computer to record the electrical activity in the brain. E. had to breathe deeply and rapidly for a bit, a strobe light flashed intermittently and E. even fell asleep for awhile. An hour and a half later, it was all said and done. E. said he didn't feel anything throughout the whole procedure.

The EEG tech explained to E. a little more about the importance about taking the Dilantin. When E. underwent brain surgery, there were holes left in the places where the brain tumors once were. Those holes filled with blood. Well, brain cells don't much care for the iron in that blood and will freak out at the iron's presence. Instead of throwing a party, they throw a big tizzy fit in the form of a seizure. The Dilantin increases the seizure threshold so those brain cells are more tolerant of the trespassers. If you don't take your Dilantin like you're supposed to or if you go off your Dilantin too soon, the result might be a big ole seizure which could potentially be fatal. Fatal. *Gulp.*

No results were immediately available from the EEG, of course, but I guess what we're hoping for is no "spikes" in the peaks or valleys. Since E.'s never had a seizure either pre or post surgery, we're hoping the EEG results are all normal and he'll soon be able to wean off the medication.

After the EEG, we visited with E. regular oncologist. We last saw him when he visited E. in the hospital after brain surgery, so it's been awhile. Like everyone else, he was more than pleased with the recent PET/CT and MRI results, but also with the way E. was looking and feeling. Nothing much for him to do right now, which is great. We'll see him again after the March check-up for another follow-up.

S.

Neuro Surgeon Appt

E. met with the neuro surgeon, Dr. M., yesterday. He reviewed the MRI CD that we brought back with us from Texas and was pleased with the results.

Dr. M. asked about any pain or discomfort that E. was feeling and E. mentioned that he sometimes gets some "stabbing" or "shooting" pains around the surgical site (that shoot up to a 6 or a 7 on a scale of 1 to 10, but only last for a few seconds at a time). The doctor didn't seem too surprised by this and explained that it was probably from the occipital nerve. He couldn't really say if it would get better, but did say that if it got worse, sometimes surgery was necessary to deaden that nerve.

Dr. M. also pressed on E.'s forehead and asked if that "pin" bothered him any. Pin? E. shook his head in confusion and questioned, "Pin?" The doctor nonchalantly commented, "Yeah. Some pins and small plates to hold things together." Hmmm. Wow. Things you learn.

As you might remember, E.'s been taking an anti-seizure medication called Dilantin. E. hasn't had any seizures, but the risk was high (before the surgery because of the tumors and the swelling pushing on parts of the brain and then after the surgery because of the havoc the surgery itself caused in the brain). Anyways, E. is scheduled to have an EEG which will measure electrical activity in the brain. If it comes back normal, then he can finally begin to be weaned off the medication.

E. shook Dr. M.'s hand. "Thank you Doc. You did good work." Peanut blew him kisses. I loved it.

S.

Who's He Look Like?

We hear so often how much he looks like daddy.

I really don't see it much.

I'm not saying he looks like me either.

He looks like a little elf to me.

*Grin.*

Happy New Year!

Another year has flown by. It doesn't seem possible really. It seems like only a short while ago we were bringing in 2010. And yet, in the blink of an eye, 2010 is gone and 2011 snuck on in.

Once again, I've heard so many people comment on how glad they were to see 2010 go and how much better 2011 has to be. I don't really see it that way. Oh sure, 2010 posed a few challenges for us, as did 2009. And if you really want to go back, I bet 2008 had some challenges too. As did 2007. Matter of fact, I bet every.single.year has had some challenging moments. Not just for us. For you too. For every single one of us.

Life is like that. You see, life isn't perfect. And I'll bet big money 2011 isn't going to be perfect either. Here's the thing though ... life doesn't have to be perfect to be beautiful. Cheesy? Maybe. But true.

Oh, don't get me wrong. I'm not always sunshine and roses, rainbows and unicorns. Sometimes I fall into pits of despair and wallow in self-pity. But, and here's the big but ... I'm usually enormously thankful for what I do have. So, I'm gonna ride those waves of thankfulness and gratitude as long as I can for as far as I can and hope they pull me through those ruts we all can sometimes fall into.

All said and done, 2010 was a pretty incredible year. There were moments I wasn't so sure I'd still be able to say that at the end, so the magnitude of that statement is not lost on me. And I can't begin to put into words how thankful I am. With that, I say goodbye to 2010 with a sigh and a smile. Not perfect, but still beautiful. Oh so beautiful.

Welcome 2011!

S.