E. Updates

3 Years

2012-02-10T11:15:00.000-08:00

Three years ago, our world went topsy-turvy. We were suddenly thrown into a surreal land that we could never have imagined, where suddenly every thought we had and every decision we made was dictated by cancer. Even now, three years later, cancer is not far from our minds. The anxiety builds as each MRI or PET/CT approaches. When there is good news, we quickly breathe a sigh of relief, only to have that anxiety start building again as we wait for the next scan.

Yet, life is good. E. is here. I have my husband. The kids have their dad. We enjoy the simple everyday blessings of friends and family. There is so much to be grateful for, of which we are reminded every single day. Like the ole saying goes, "We may not have it all together, but together we have it all."

Oncologist Review

2012-01-19T19:52:00.000-08:00

E. met with the local oncologist today. It was another one of those review appointments more than anything. He was pleased with how E. was doing and was thrilled with the most recent MRI results. E.'s still having some long-term effects of the chemotherapy and radiation, including neuropathy in his fingers and toes, but there's nothing that can be done about that. Overall, E.'s doing great. Unless something comes up in the meantime, E. doesn't have to see the oncologist again for another six months as well.

MRI Results

2012-01-17T09:01:00.000-08:00

It was before 8:00 in the morning when the radiation oncologist called with the results of yesterday's MRI. There is no new growth. Matter of fact, he said things even look a little better. I asked if cancer could present like that ... growing and then shrinking. "Not typically" was the answer, especially since there has been no treatment involved. "And what about scar tissue?" was of course my next question. "Sometimes." Don't you just love how clear this all is? Us too. But really, this is the best news we could have gotten. It's not the news we expected, which it makes it all the better and more incredible. Things need to be kept a close watch on, so another MRI will be scheduled for a couple of months down the road. In the meantime, we'll keep a close eye on things at home too.

MRI Day

2012-01-16T13:06:00.000-08:00

E. got his MRI done today without any fanfare.

He has an appointment with the oncologist on Thursday, January 19th, so I'm assuming we'll get the results then.

Brain Tumor Review Board

2012-01-12T09:57:00.000-08:00

The radiation oncologist called to let us know that the Brain Tumor Review Board had met and reviewed E.'s case. And we have no more information than we did yesterday! The Board felt like the area around the cavity in the back of E.'s brain showed more enhancement than the area around the front cavity. They agreed that there was some "fuzziness," but nothing definitive. There was some additional confusion because it was felt like the MRI's were not taken from the same angle. It is very difficult to always get the exact same angle in each and every MRI and therefore when looking at the different "cuts," you're not always looking at the same thing. In any event, the Board agreed that the next step should be another MRI, which is already scheduled for the 16th.

Review with Neurologist

2012-01-10T21:50:00.000-08:00

E. met with the local neurologist today. She reviewed his meds, including the new one he was put on while at Texas, and left everything the same. She did rewrite his prescriptions so in case there are any problems, it will be easier to deal with her locally than try to may contact with the doctor back in Texas. E. did mention that he's had fewer headaches and less neck tension since adding the second anti-seizure medication, so that was a nice bonus. The rest of the appointment turned out to be a lovely social visit, comparing notes about New Orleans since we were fortunate to spend a few days there and she studied there. Unless there's a problem or something new comes up, E.'s not scheduled to see her again for six months.

Good News and Not-So-Good News

2011-12-15T12:52:00.000-08:00

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

2011-12-14T19:10:00.000-08:00

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

2011-10-30T12:44:00.000-07:00

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

2011-10-30T12:10:00.000-07:00

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

2011-10-08T22:29:00.000-07:00

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

2011-10-03T21:45:00.000-07:00

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

2011-09-30T15:49:00.000-07:00

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

2011-09-20T20:39:00.000-07:00

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

2011-08-24T08:10:00.004-07:00

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

2011-08-20T18:31:00.000-07:00

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

2011-08-06T22:11:00.001-07:00

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

2011-08-04T17:03:00.000-07:00

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

2011-06-23T10:51:00.000-07:00

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

2011-04-07T14:05:00.000-07:00

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?

2011-03-24T17:16:00.000-07:00

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

2011-03-22T14:41:00.000-07:00

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

2011-03-08T23:15:00.000-08:00

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.

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"

2011-03-03T15:40:00.000-08:00

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

2011-03-02T22:03:00.000-08:00

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.

2011-02-23T15:31:00.000-08:00

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

2011-02-11T23:31:00.000-08:00

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.

Referral to a Neurologist

2011-01-26T09:29:00.000-08:00

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

2011-01-25T12:18:00.000-08:00

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

2011-01-19T23:49:00.000-08:00

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.

Neuro Surgeon Appt

2011-01-05T22:21:00.000-08:00

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.

Who's He Look Like?

2011-01-04T08:09:00.000-08:00

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!

2011-01-01T16:22:00.000-08:00

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!

A Little Lovin'

2010-12-19T10:29:00.001-08:00

Straight out of the bath

and The Nut had to stop

and give his teddy a little lovin'.

There's not a day that goes by

that he doesn't make us smile.

Appt. Formality

2010-12-18T13:35:00.000-08:00

Oops, I almost forgot to mention another doctor appt. It was more of a formality than anything, but since this blog has kept track of E.'s entire medical saga, I think it's only fitting to include it all.

After E. completed his Cyberknife treatments, he needed to wait to six to eight weeks for another MRI and then have follow-up appointments with all his respective doctors. Well, he had that MRI (with the incredible N.E.D. results we had been hoping and praying for) in Houston a few weeks ago and we met with the doctors there. We hadn't yet met with the local doctors here though.

On Friday, E. had an appointment with Dr. T., the radiation oncologist. Dr. T. reviewed the CD of the PET/CT and MRI scans we had brought with us from MD Anderson and said everything "looked good." He spoke with E. about some lingering side effects and put him through a typical physical examination. When he noticed E.'s hair loss on the back of his head due to the radiation, E. said, "SHE thinks I should just shave it all." To that, Dr. T. responded, "Or wear a hat!" E. doesn't think either one of us know what we're talking about.

Dr. T. was pleased with E.'s test results and with his appearance, as are we. He agreed with the doctors in Texas that E. needed to be watched closely as once cancer spreads to the brain it can crop up anywhere, and of course, can be treated more effectively the quicker it is found. He concurred with the time frame of scans at three-month intervals and would see us again after E.'s next scans in March.

There's still two more formality appointments pending locally ... the medical oncologist and the neurosurgeon, both scheduled for mid-January. Oh, and E. needs to have his Dilantin (anti-seizure medication) levels checked again to make sure he's still in the therapeutic level, so he'll be headed to the lab next week.

S.

Appt. with the Oncologist

2010-12-02T14:23:00.000-08:00

Today we met with the oncologist. It was another one of those funky appointments where we met with a slew of people before we actually met with the person we wanted to. First it was the CNA, then the RN, then the PA, and then the research assistant. Finally, Dr. A. came in with an entourage of four other doctors following him (that was a first for us ... and just a little odd to have four other doctors standing there who never said a word). It made for a very crowded room.

Dr. A. was blunt and to the point. He said that E. has been through a lot since he'd last seen him, but was impressed with how well E. looked. He reaffirmed what we already knew - that the PET/CT and the MRI showed no cancer at this point. He stated that when there is cancer in the brain, it becomes the priority and needs to be watched closely. He'd like to see E. back in three months for repeat scans. E. will also have a consult with a doctor from the brain center at the next visit as well.

We asked a few questions. No, there is no need for follow-up or "mop-up" chemotherapy right now. If the cancer were to come back anywhere, then different chemotherapy treatments would be considered. Yes, E. can get in the hot tub and sauna again (E. was thrilled to hear this). No, there is nothing we need to do with the "HER+" status of E.'s cancer, but that is good information to keep on hand in case it is needed later.

Five minutes after Dr. A. and his entourage entered, the whirlwind of doctors went out the door. It was a tad bizarre. But the good news remains, as do the smiles on our faces.

Christmas Came Early

2010-12-01T12:52:00.000-08:00

We arrived a few minutes early for E.'s 11:00 appointment with Dr. M.

We signed in and sat in the waiting room.

We waited.

The CNA came out and took his vitals.

And we waited.

We were taken to an examining room and the nurse went over his chart.

And we waited.

The Physician's Assistant came in and reviewed his medical history. She asked lots of questions. She repeatedly asked E. if he was feeling any pain in his chest or if he was having any trouble swallowing. E. and I exchanged a look. Why was she asking that? Should he be feeling pain? Should he be having trouble swallowing? She stated that Dr. M. had reviewed the scans and would have the results for us. She examined E.. Then she left. (I should note that on previous visits, the Physician's Assistant has always given us the test results herself.)

And we waited.

Finally, Dr. M. made his appearance. He came in and said, "Well, like my PA already told you ... there is NO EVIDENCE OF DISEASE. As of right now, you are completely cancer free."

(E. did say the next time he sees that sweet PA, who we honestly love, he's gonna kick her ass!)

Dr. M. went on to say that the brain MRI shows "little blood clots in the area of the brain surgery that are resolving," which is "normal," that the area of that once positive lymph node shows "nothing," and the esophageal and abdominal area looks "pristine." He is recommending repeat scans in four months, as any recurrences are much more treatable the earlier they are caught.

Any chemotherapy at this point is debatable, but needs to be discussed with the oncologist at the appointment tomorrow. Of course, the news we just heard couldn't be better! We're both breathing a big sigh of relief and counting our sweet blessings yet again.

Day of Tests

2010-11-30T22:49:00.000-08:00

After a long day of traveling (with a not-so-happy toddler and even-less-happy co-passengers), we finally crashed in the hotel bed at about midnight ... with that squirmy toddler snuggled comfortably between us (comfortably for HIM, that is). E. was not allowed to have anything by mouth prior to the morning's tests, so there was no rush to eat breakfast before his first appointment.

Peanut and I dropped E. off at "Nuclear Medicine" for his PET/CT scans at 10:30 a.m. and proceeded to wander the halls while we waited for him. We stopped at the cafeteria to grab a bite to eat and then we walked around some more. We walked, and we walked, and we walked. E. was finally done at 1:30, which gave us enough time to eat a quick lunch of tuna sandwiches before his next appointment. After a slight mishap of taking him to the MRI center in the wrong building, we arrived at his 2:30 p.m. appointment at the right location only a few minutes late. They told me it would be at least a couple of hours, which at least meant that Peanut could get a nap in (and maybe me too!). By 4:45, Peanut and I were cruising the halls again, waiting for E. to be done. It was about 5:15 p.m. before he was finally out and ready to go.

E. said the tests were "fine." He said the PET/CT scan was the same as the ones in the past. He stated that the MRI was very different than the ones he received at home though. They put ear plugs in his ears, rolled towels on the sides of his head and then a hard, clear, plastic piece came down over his head, like a "stealth fighter pilot." He said it was very loud and very confining. They gave him a button to push if he had a panic attack, but E. said he closed his eyes through the entire thing and didn't have to push the button at all. At some point during the MRI, E. said he could feel his head burning in the spots where he had had the surgery. Is that a good thing? Is that a bad thing? Is that normal? Is that not?

I have a feeling it's going to be a long night. We meet with the doctor tomorrow at 11:00 and should know the test results then.

Texas Bound

2010-11-28T22:47:00.000-08:00

Here we go again.

We're headed to Texas in the morning. Travel all day Monday. Tests all day Tuesday ... labs, PET/CT, MRI and possibly an endoscopy. A doctor appointment on Wednesday and another doctor appointment on Thursday. Home on Friday.

Or that's the plan as of today anyways.

Thankfulness

2010-11-25T20:58:00.000-08:00

Happy Thanksgiving!

It's that time of year to be thankful

and we obviously have much to be appreciative about.

Thankfulness abounds in our home ...

which is evident by our "Thankful Tree."

Just take a look at some of these great leaves

expressing all the things our family has to be thankful for.

Every day we each rattled off one thing we were thankful for.

We could have kept going for months.

We could have had enough leaves to decorate the trees of a forest.

That's a pretty neat feeling.

I am, well, thankful.

Peanut Enjoying Fall

2010-11-07T19:37:00.000-08:00

He loved playing in the leaves in Grams and Gramps' backyard.

And he thought he could climb trees just like his big brothers!

Help Needed - COVERED

2010-11-04T12:26:00.000-07:00

Updated: Throughout this journey, E. and I have repeatedly counted our blessings. We have been left speechless time and time again by the outpouring of love and support by our family and friends. The kindness shown us, and our children, has been heart warming and uplifting. There have been some true Hallmark moments, which have filled up the well of goodness in our hearts and that we draw from on the rainy days. It has brought more sunshine to our lives than you'll ever know. It is difficult to put into words the gratitude and appreciation we feel. And you've done it again folks ... you've reduced me to a mascara-streaked, snotty-nosed, blubbering-mess. What can I say? Warm and fuzziness brings out the best in me. The boys will all be in good hands while we're in Texas and for that, we thank you! S.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We've got another trip planned to Texas and need some help on the homefront. E. is scheduled for the full body PET/CT scan, as well as the MRI of his brain. Additionally, he has several doctors' appointments scheduled too.

We'll be taking Peanut with us, but are hoping to piece together coverage for the rest of the crew while we're gone. We'll be leaving Monday after the kids go off to school and we'll be home on Friday before bedtime. Here's what we're looking at:

Monday, November 29th

COVERED 3:20 pm: pick up gymnast from school (SSES) and take to gymnastics (by Wild Island)

COVERED 4:00 pm - 8:00ish pm: hang out with boys, help with homework, make dinner, oversee bedtime routine

COVERED 7:30 pm: pick up gymnast from gymnastics (by Wild Island) and take home

COVERED Overnight and Tuesday (11/30) morning duty: oversee morning routine ... boys up at 7:00 a.m. and out the door for the school bus at 8:05 a.m.

Tuesday, November 30th

COVERED 4:00 pm - 8:00ish pm: hang out with boys, help with homework, make dinner, oversee bedtime routine

COVERED Overnight and Wednesday (12/1) morning duty: oversee morning routine ... boys up at 7:00 a.m. and out the door for the school bus at 8:05 a.m.

Wednesday, December 1st

COVERED 3:00 pm - 8:00ish pm: (school gets out early on Wednesdays, hence the earlier start time) hang out with boys, help with homework, make dinner, oversee bedtime routine

COVERED Overnight and Thursday (12/2) morning duty: oversee morning routine ... boys up at 7:00 a.m. and out the door for the school bus at 8:05 a.m.

Thursday, December 2nd

COVERED 3:20 pm: pick up gymnast from school (SSES) and take to gymnastics (by Wild Island)

COVERED 4:00 pm - 8:00ish pm: hang out with boys, help with homework, make dinner, oversee bedtime routine

COVERED 7:30 pm: pick up gymnast from gymnastics (by Wild Island) and take home

COVERED Overnight and Friday (12/3) morning duty: oversee morning routine ... boys up at 7:00 a.m. and out the door for the school bus at 8:05 a.m.

Friday, December 3rd

COVERED 3:20 pm: pick up gymnast from school (SSES) and take to gymnastics (by Wild Island)

COVERED 4:00 pm - 8:00ish pm: hang out with boys, help with homework, make dinner, oversee bedtime routine

COVERED 7:30 pm: pick up gymnast from gymnastics (by Wild Island) and take home

We should be home in time to tuck everyone in for bed! Anyone up for a piece of the adventure? (I'm not really sure how I can make this sound more appealing. 15 passenger van available for your use? Burping and farting contests a regular occurrence? Knock-knock jokes to your heart's content? Stocked refrigerator?)

Please, really, if you can help out ... let us know. We'd sure be appreciative.

The Nut

2010-10-07T09:28:00.000-07:00

It's official. Peanut is no longer a baby. He is a boy.

And he likes all things "boy."

Probably inevitable with the daily big brother influence.

Balls, sticks and rocks are favorites.

As are trucks and cars, or really anything with wheels.

A new questionable skill is gun shooting.

Forks, sticks and spatulas all become "guns,"

complete with pretty decent sound effects.

(The machine gun sound doubles as a motor boat too.)

He runs, and climbs, and jumps.

If he's still, he's probably asleep.

He's such a great kid,

who brings so much to our lives.

(Disclaimer: While he is adorable,

his eyes are not THAT blue.

I am playing and learning with photo editing

and was trying to match the Dodger blue.)

Neuro Surgeon Follow-Up

2010-10-06T15:45:00.000-07:00

E. met with the neuro-surgeon today for his six-week post-surgery follow-up. Everything is looking good. E. is healing nicely, although it could take up to six months for all his vision issues to clear up (if they do - which they hopefully will). Like the radiation oncologist already said, E. will have to get another MRI in six to eight weeks. E. will resume physical therapy next week, and add occupational therapy to the mix too. He will continue to take Dilantin (the anti-seizure medication) for three more months. Then, if an EEG shows that he's not having any seizure activity, they will be able to taper him off those meds. Unless something crops up in the meantime, E. won't have to see the neuro-surgeon again for three more months. One less appointment on the calendar is a good thing around here.

Infectious Disease Doc

2010-10-05T15:30:00.000-07:00

E. had an appointment with the Infectious Disease Doc today. All his labs (blood counts, chem panels, iron levels, etc.) were normal, so he's been deemed "cured" of his staph infection. The doctor actually said that in the whole scope of infections, E.'s was a "weenie" infection (much better that kind of weenie infection than the other kind of weinie infection, if I do say so myself). Tomorrow marks the final day of the ten days of Daptomycin anti-biotics, and if the peripheral IV "accidentally" comes out on its own after the final IV in the morning, we don't even have to return to the doctor's office. We were warned that sometimes the infection returns in one to three weeks, so we need to be watching for fever, chills, nausea and vomiting. Aside from any of that, the doctor said he hoped to never see us again.

"Bloody Monday"

2010-10-04T20:46:00.001-07:00

E. had to go to the Infectious Disease doctor's office today for labs. All the infusion patients have to get blood drawn on Mondays ... so the nurses are busy being vampires on Mondays, drawing blood, blood and more blood, much like an assembly line. Somewhere along the way, they've dubbed Mondays as "Bloody Monday." It was funny to hear patient after patient approach the receptionist's window and say, "I'm here for Bloody Monday."

Since he does not have a PICC line, E. also got a new IV while we were there (I guess peripheral IV's are only good for four days or so). The daily IV infusion of anti-biotics at home is going well and hopefully when the lab work returns tomorrow, we'll find out that his blood still looks nice and clean.

Cyberknife Complete!

2010-10-01T22:21:00.000-07:00

E. completed the third and final Cyberknife treatment today. Yay! The people in that office are nothing but nice. We loved them when E. was there a year and a half ago for radiation and were thrilled to see so many familiar faces when we returned this time. We highly recommend these folks for all your radiation needs. Should you happen to have any radiation needs, that is.

Been wondering what the face mask/mold thingie looks like that we've been talking about? Remember, it started out as a flat floppy piece of plastic, which was warmed and molded to E.'s face where it hardened into this shape . . .

For each Cyberknife treatment, his face fit perfectly into the mold to hold him still. He could breathe fine through the plastic netting material and even open his eyes and look around if he wanted. It did keep his chin in an awkward position, tilted up, which I think added a bit more to the pressure on the back of his head. The plastic rim around the sides slid into grooves and there were snaps which locked into place. He wasn't going anywhere. Remember the days of defensive tactics ... where the head goes, the body will follow? Well, if the head isn't going anywhere, neither is the body!

So, he lays on that table, all alone in that room. A huge metal door closes as the radiation folks leave. They then control everything via remote control. The can see and hear everything E. does and they speak to him through the intercom. That big machine you see is the actual Cyberknife. It moves around E. and shoots the radiation where it needs to, based on the intricate mapping they previously did using the CT and the MRI scans. E. says he keeps his eyes shut the whole time but can tell there are bright lights around him.

I won't even pretend that I understand half of what Cyberknife is about. I just hope it's kicking some bad guy ass in E.'s brain, while leaving us the ornery fart we know and love.

Okay, Cyberknife is done. What now? Now, we wait for about eight weeks and then E. goes for another MRI, which hopefully tells us everything was a raging success!

(P.S. My first day of "SASH" ... Saline, Antibiotic, Saline (but no Heparin because of the brain stuff) went off with only minor speed bumps ... and only one call to the infusion nurse.)

Cyberknife #2 Complete

2010-09-30T22:50:00.000-07:00

I could have sworn that we were told that Cyberknife would take approximately 45 minutes. Now granted, it supposedly stops when the patient moves and starts up again when they are still. If that's the reason for the delay, E. must be one wiggly fellow because it is taking at least double the estimated time.

Today's Cyberknife session wasn't nearly as painful for E. He said it was still uncomfortable to lay on that back incision but it didn't cause the same pain as yesterday. He also didn't complain of the same splitting headache afterwards. He remarked that at some time during the treatment he could smell something burning. We sarcastically joked that maybe it was his brain.

We met with the radiation oncologist and were finally able to see pictures of E.'s latest MRI. The areas where the two tumors had been looked like gobstoppers with circles of colors all around them. When the Tumor Board was reviewing E.'s case for the possibility of Cyberknife, we had been told that they would be looking at the size of the cavities left behind after the tumors were removed. We knew that the original tumors were too large for Cyberknife, but were told that once they were removed, the cavities would shrink in the healing process. The cavities we saw on that MRI were still BIG! Like really big! The radiation oncologist explained that the cavities fill with fluid and the some of it may eventually be reabsorbed into the brain, but we were left with the impression that they would pretty much remain there forever. On a positive note, there was "nothing new" from the original MRI when E. first went to the emergency room (meaning no new cancer and no new suspicious spots).

When we first discussed Cyberknife, we were told that the typical course of treatment for patients with brain metastases consists of between three and five sessions. Today we found out that E. only needs three treatments. That means that tomorrow will be his third and final Cyberknife treatment. We also discussed the need for steroids or other medications. The radiation oncologist explained that frequently patients have side effects from the radiation or Cyberknife that require steroids and/or other medication. Many of the side effects are the direct result of swelling in the brain ... headaches, dizziness, fatigue, nausea, seizures. If E. can manage to avoid all these side effects, he won't have to take the steroids or any additional medications. We'll be keeping an eye out though, because as is the case with most radiation patients, the side effects are cumulative and usually show up after treatment is all said and done.

As of right now, he's still feeling good. Woohoo!

Trained

2010-09-30T13:27:00.000-07:00

I'm trained and ready to go. I now know how to flush an IV. I now know how to give IV anti-biotics. We've got a whole bag of supplies ... tubing, caps, sleeves, alcohol wipes, gloves, 4 X 4's, saline syringes and of course, bags of anti-biotics. Thankfully, I don't actually have to insert the IV needle, but I suppose at this point if I had to learn to do that, I would cowboy up and do that too. E. just has a peripheral IV (no PICC line) and it should last for about four days. He has to go back on Monday for labs, as do all the infusion patients (so they've dubbed it "Bloody Monday") and he'll get a new IV then. He only has 8 to 10 days left of anti-biotics left. We're thinking he got pretty lucky after hearing that most of the infusion patients have IV's for a minimum of 6 weeks. This home IV system is real high-tech too ... we hang the bag from the wall with a push pin/thumb tack. He only gets his IV anti-biotics once a day and they take 30 to 40 minutes to run, so no need to drag an IV pole around for that little bit. This little bump in the road will be over before we know it.

E.'s Home

2010-09-29T14:00:00.000-07:00

E.'s first Cyberknife treatment is done. Unfortunately, it wasn't nearly as quick and easy as we thought it would be. Laying on the back of his head really gets to be painful (where that back incision is), especially for extended periods of time. And the Cyberknife took well over an hour today. His head rests on a hard plastic piece which they "pad" with a piece of bubble wrap ... one little sheet of bubble wrap. The hard netting mask holds his head in place in an awkward position and they readjust him occasionally. He was told to keep his eyes shut as there were a series of bright lights. E. didn't actually feel anything in terms of the Cyberknife, just from laying on his head post brain surgery. By the time he was done, he had quite the headache that is just finally easing up now. Supposedly, tomorrow's and Friday's Cyberknife treatments won't be as long as today's so hopefully that is better for E.

E. was also able to get discharged from the hospital! Yay!! Tomorrow morning, he has to go to the infectious disease office for an infusion of anti-biotics. I spoke to the nurse there and it sounds like the insurance company has approved E. to receive the IV anti-biotics at home for the duration of his treatment. There was one little twist that I wasn't aware of ... tomorrow *I* will be trained in flushing E.'s IV line and giving him his IV anti-biotics. No time to be nervous, just gotta do what's gotta be done.

E.'s happy to be home. And we're happy to have him here.

Tidbits of Good News

2010-09-28T14:18:00.000-07:00

* The infection has been confirmed as Staphylococcus Epidermis. Of the two Staph infection possibilities, this one sounds like the better one to have.

* The infection originated from E.'s port. The port has been removed so it obviously can't cause him any more trouble.

* E.'s EKG looked good and it doesn't appear that any bacteria made themselves at home in his heart.

* E. is responding well to the anti-biotics and today's cultures were clean.

* There are another 8 to 10 days of IV anti-biotics remaining. The infectious disease doctor indicated she's thinking about discharging E. after his Cyberknife treatment tomorrow, but she is awaiting "insurance approval."

(I am dumbfounded by insurance's involvement in E.'s potential discharge. Being at home has to be less expensive than being in the hospital for another 10 days. But I'm going to focus on the positive and that discharge is being discussed ... I'm crossing my fingers that E. will be in his own bed tomorrow night. Well, his rented hospital bed in his own room anyways.)

Still in the Hospital

2010-09-27T22:57:00.000-07:00

E. did in fact get his CT today. He also got his face mask mold made. He is all set to start Cyberknife. Still no word about a possible discharge from the hospital, so as it stands right now, he'll be wheeled over from the hospital to the building next door for his Cyberknife treatments. He's currently on the calendar for three Cyberknife treatments ... Wednesday, Thursday and Friday.

We're really hoping that E. will be discharged from the hospital soon. Other than being a little grumpy and a lot bored, he is feeling good. He does have some cabin fever, or is that "hospital fever?" And he says the hospital food is, ummm, how should I put this? ... not very edible. He wants out of there!

Cyberknife's Still a Go

2010-09-27T06:34:00.000-07:00

The radiation oncologist was in this morning already and we were happy to hear that a little ole staph infection isn't going to derail the plans for Cyberknife. They'll wheel E. over today for his scheduled CT, and he'll also get his mold/face mask made. Then, whether he's at home or in the hospital, he should be getting his first Cyberknife treatment on Wednesday just like originally scheduled.

Staph Infection

2010-09-26T22:01:00.000-07:00

We've learned so much about esophageal cancer in the last 18 months. And diabetes. And brain metastases. And other things I never thought we'd be learning about.

Now we're learning about infections. It can be a tad bit overwhelming. I think I should have paid a little better attention in biology. (And if I get any of the following information wrong, please forgive me. We are learning as we go.)

The hospitalist explained to us that infections are either "Staphylococcus" or "Streptococcus" infections; E.'s being the "Staph" variety. (But there are over 30 species of Staph and many more sub-species as well.) That much we knew last night. The blood that was drawn on Friday and cultured, already grew something by Saturday morning which tested positive ... that is why we wound up in the emergency room. Each day as the culture grows, they are able to tell more and more about the specific kind of bacteria in E.'s blood. That is important to tailor the right anti-biotics. Right now, E. is on two "high-powered, broad-spectrum IV anti-biotics." Depending on what the cultures show in the days to come, those anti-biotics will be changed to specifically target the bad guys and kill them all dead.

The infectious disease doctor informed us today that they now know that E.'s infection is "coagulase negative" which means that it is a "Non-Staphylococcus Aureus." Because it is not Staphylococcus Aureus, it is Staphylococcus Epidermis which means the infections originated on the skin somewhere. And, using my deductive reasoning skills and a little googling, I deduced that since E. has a NON-Staphylococcus Aureus, he could not possibly have MRSA (Methicillin-Resistant Staphylococcus Aureus) since MRSA is a S. Aureus. I really don't know much about MRSA other than the horror stories I've heard which have effectively scared the bajeebers out of me, so I'm pretty thrilled with this piece of information.

There are potential complications from infections in the blood, including when the infections move into other areas like the spine or the heart. E. did have an EKG done yesterday to see if there were any bacteria camping out in his heart and making themselves at home, but we have yet to receive the results. It sounds like there is pain involved when the bacteria move into other areas (such as back pain when the spine is infected) and E. has not complained of any pain, so that is a relief.

And there was still the issue of E.'s port ... One of the problems with having a foreign object in your body (such as E.'s port!) is that it makes a great little breeding ground for the bad guys. It is very hard to clean and sterilize an object inside your body. So, even if anti-biotics effectively treat the infection, the bad guys hiding out on/in the foreign object (port) could reinfect the body in no time. The easiest answer is to remove the foreign object. Luckily, in E.'s case, he's not currently using his port and there are no plans to use a port in the near future ... so out it came! The good news is that the port is out. The bad news is that removing the port disturbed the bad guys. It riled everyone up in the body and now we have to wait about 24 hours for everyone to settle down (and have a couple of shots of anti-biotics while they're hanging out) until blood can be drawn again. Once that blood is drawn again, we have to wait for the cultures to come back.

I attempted to clarify with infectious disease doctor, "So, they'll draw blood on Monday and if the cultures come back clean on Tuesday, we can make discharge plans then?" The response I got wasn't nearly as encouraging as I had hoped, "Wellllll, cultures can take 24, 48, 72 hourrrrrs." Further identification still needs to be made on the infection. And, the blood cultures need to be negative before they'll discuss discharge. Oh, and the best case scenario at this point is that once he's released, he'll be on IV anti-biotics for a couple of WEEKS yet.

P.S. Room #333 this time around.

A Night Away

2010-09-25T12:05:00.000-07:00

Who doesn't sometimes want a night away?

A night away from responsibilities.

Away from dirty dishes, dirty laundry and dirty floors.

Away from bickering and arguing kids.

A night to feel pampered.

To have people at your service with the ring of a bell.

To have others cook and clean for you.

Sounds good, right?

Too bad that night away isn't at a spa retreat, or even a hotel.

Yup, E. is being admitted to the hospital. Ugh.

Infected Port

2010-09-25T10:19:00.000-07:00

I guess some things grow quicker than others. We didn't have to wait until Monday to find out more information. The oncologist called this morning and there is an infection in the port. Back to the emergency room we go. E. was so hopeful when we heard the news, "So, we have to go to E.R. to pick up a prescription?" Uhhhh, more like we have to go to E.R. for IV anti-biotics and just hope he doesn't have to be admitted.

Possible Infection?

2010-09-24T22:52:00.000-07:00

E. noticed some redness and inflammation around his port on Thursday evening. It was tender to the touch too, so we put a call in to his oncologist first thing Friday morning. Luckily, there is no fever and no nausea. No other symptoms that we can tell. But, there is a chance his line could be infected. So, we were sent to the infusion center at the hospital this evening where they drew blood from E.'s port and also from his arm. They'll grow out cultures and compare the two (if there is an infection, they need to be able to determine if the infection is specific to his port or if there is an infection in his whole body). It'll take a few days to grow out the cultures ... we're supposed to call the office on Monday to see if the results are back. In the meantime, we need to watch closely for other symptoms like fever or nausea. Hopefully, there will be no symptoms and no infection.

A Plan!

2010-09-22T21:43:00.000-07:00

Before I forget, let me assure you that E. and I both survived the flu. The even better news is that it does not appear to be making its way through the house (knock on wood!).

E. had his MRI yesterday afternoon. Laying flat with pressure on the back of his head (where the back incision is) was uncomfortable, but other than that, the scan was uneventful. We confirmed that the radiation oncologist would be able to access the films and reports in preparation for the Brain Tumor Board on Wednesday and yet were still a tad leery when we left. Information doesn't seem to flow as well between doctors as it does in places like MD Anderson, the Mayo Clinic or other big medical facilities. Once you've experienced the process in a big facility, it certainly makes you wonder why other facilities don't replicate what obviously works so well. Aaaahhh, a tangent I won't go off on right now.

Anyways, the Brain Tumor Board obviously met bright and early. It wasn't even 8:30 a.m. when we received a phone call from the radiation oncologist informing us that E. would be having radiosurgery. That means that E. gets to have Cyberknife! While we were prepared for either of the options, if given the choice, we would definitely have chosen Cyberknife so the news put smiles on our faces. I know some people are confused when we talk about Cyberknife and we were too initially. Just to clarify: it is not surgery; it is more like fancy radiation.

A CT still needs to be done, as both the CT and the MRI are used to "map" out exactly where and what the radiation will zap. Some sort of mask will need to be made to hold E.'s head exactly in place because the radiation is so precise (hopefully I'll be able to provide a picture of E.'s mask soon). E. has appointments for the both the CT and the mask on Monday. Cyberknife will then begin on Wednesday. We were initially told that there would be between 3 and 5 treatments of Cyberknife (one treatment per day) and that each treatment would take approximately 45 minutes. We haven't heard anything different from that at this point.

Other than knowing that E. gets to do Cyberknife, we don't know what else the MRI said. Hopefully we'll get more details about that soon too.

After some recent lab work, it was discovered that E.'s Dilantin level (anti-seizure meds) isn't at the therapeutic level, so the radiation oncologist increased his dosage. While E. has never had a seizure, they want to make sure he doesn't start having them now. I guess radiation treatments to the brain (or really, any time you mess with the brain) can increase your risk for seizures so they do what they can preventatively.

It feels good to have a plan. And a plan that we wanted feels even better.

Flu Rounds

2010-09-19T20:42:00.000-07:00

Just about the time E. finished up with the flu, I started. It was so bad that we missed the Wolfpack game that we were so looking forward to. I tried to rally, really I did. We had transportation arranged for the gymnast and we had a sitter for all the kids. We were ready to do a little tailgating and cheer UNR on to victory. Instead, E. had to hoot and holler at the television and I slept through all the festivities, opening my eyes only long enough to see that UNR kicked some butt. Definitely not the date night we had planned. Ah well, such is life. Hopefully we'll get the chance for another date night in the near future.

The flu hung on for a couple of days and just as I was feeling better, E. was feeling worse again. We're hoping that the yucky flu bug isn't coming back for Round #2. And we're hoping that the rest of the house stays healthy as well.

E. has a busy week ahead ... physical therapy a few times, the MRI, hopefully some occupational therapy and possibly a doctor's appointment to schedule our future weeks. We'll keep y'all updated.

Still No Radiation Plan

2010-09-16T19:30:00.000-07:00

We met with the radiation oncologist today to figure out a plan. At this stage of the game, we should know better. You can't just get a plan with one appointment. There needs to be tests, and scans, and labs, and more appointments before you can get a plan. Even though we know that is how the process works, it is still frustrating.

Like we anticipated, the two options are Cyberknife and whole brain radiation. The choice is not left up to us, but rather to the Brain Tumor Board. In order for the Brain Tumor Board to even review E.'s case, they need the information from a detailed MRI. Like we were originally told, Cyberknife was not an option to treat the two tumors because of their large size. The Brain Tumor Board now needs to review the size of the cavities left behind. Typically, once a tumor is removed, the cavity left behind shrinks in the healing process. If the cavities are now small enough, E. may be eligible to receive Cyberknife versus whole brain radiation.

According to the literature given to us by the radiation oncologist, Cyberknife definitely sounds like the "easier" and "better" of the two options. Cyberknife delivers high doses of radiation to the tumor (or tumor area) via multiple beams that enter the body from different angles. This makes it possible to "concentrate" the radiation at the point of beam intersection while giving the rest of the brain only a small overall dose. The precise accuracy of Cyberknife minimizes the risk of harming surrounding healthy tissue, and as a result, larger and more effective doses of radiation can be administered. Cyberknife treatment for brain metastases generally consists of three treatments, or sometimes five. The side effects of Cyberknife are usually minimal and the period the patient must be on steroids is short (usually only during treatment and for a few days after). Another benefit to Cyberknife is that a patient can get Cyberknife now and can always get whole brain radiation later, if needed.

Whole brain radiation, on the other hand, radiates the whole brain. (Go figure. That must be why they call it "whole brain radiation.") Whole brain radiation would be given daily over the course of three weeks. It also requires steroid use for about a month. (Steroids help with brain swelling and edema, which is good. But as we all know, steroids make blood sugar levels go wacky, which is not good. Steroids also have their own side effects, which are tough for some people to tolerate.) Whole brain radiation typically affects cognitive skills ... short term memory, mathematic calculations, word recall, etc. Often patients who receive whole brain radiation are not quite as "sharp" as they were. This concerns E. greatly.

So what's the next step? E. is scheduled for a "detailed" MRI on Tuesday afternoon. (I thought all MRI's were "detailed," but they made it sound like this one was more "detailed" or something.) The Brain Tumor Board will then meet on Wednesday and we are hoping they will review E.'s case. For either form of treatment, E. will also have to have another CT scan. He will also have to have a mold made of his face ... some sort of heavy netting material that forms to his face and hardens ... it also extends past the sides of his face and will hold his entire head in place for each treatment session.

We will then meet with the radiation oncologist again. To come up with a plan.

I need a plan. I hate not having a plan.

(Oh, and just to let you know ... that "really quick" appointment wasn't really quick. Even though the appointment was scheduled for 8:30, E. was still 20 minutes late to his 9:30 physical therapy appointment.)

Appt. Rescheduled

2010-09-15T14:57:00.000-07:00

We were all set to meet with the radiation oncologist today and get some sort of plan going. I've poked around a little on-line and I'm not really sure what kind of radiation E. will be getting. I think the assumption is that it will be "whole brain radiation." One possible option I've found though is Cyberknife. It is my understanding that Cyberknife treatment could be done in fewer sessions and with fewer side effects. That sounds pretty appealing. At the time that E.'s brain tumors were discovered, we were told that Cyberknife wasn't an option because the tumors were too big. Now that the tumors have been removed though, we're not sure if Cyberknife is an option for the remaining cancer cells. Anyways, these were all things we were hoping to discuss with the radiation oncologist today. We figured we'd collect information, get questions answered and get a plan in place.

But then we got a phone call informing us of a "scheduling error" and that we needed to reschedule the appointment. The receptionist suggested tomorrow morning as there were "all sorts of appointments available." Perfect, I said. E. has physical therapy from 9:30 to 10:30 in the same building, so we could come in at 10:30. Except the 10:30 appointment was booked. And so was the 11:00 slot. And the 11:30. She offered us an appointment at 9:45 ... I explained that probably wouldn't work out so well because of the previously mentioned physical therapy appointment. She then stated that "the appointment should be really quick, so you could come here first and then go to physical therapy." We're discussing brain cancer and that appointment is supposed to be REALLY QUICK?!?

To make a long story short (well shorter than it could be), we finally settled on an 8:30 appointment tomorrow morning. It makes for a crazy morning here ... getting the boys off to school, having Peanut up, fed and ready, and getting us across town by 8:30, but we'll make it work. We're anxious to get this show on the road.

Sick with the Flu?

2010-09-12T20:41:00.001-07:00

E.'s had a horrible weekend ... headache, fever, chills, vomiting, diarrhea, body aches, stomachache, and just all-over-cruddiness. His bed and the bathroom are the only two places he's seen since Friday night. He's been miserable.

It's gotta get better soon.

DMV Success

2010-09-10T08:34:00.000-07:00

We couldn't put it off any longer. I want you all to know that we braved the DMV yesterday.

It wasn't pretty.

We first went to the DMV (I started quivering just as soon as we pulled into the parking lot). Even the parking lot is a fiasco.

Then we got sent to the police department (to deal with the stolen license plate), and in turn got sent to the police sub-station (where we filled out the report and relinquished the remaining plate). We had to make a quick stop for lunch (Peanut doesn't much buy the "we'll have lunch just as soon as we finish these errands." When he's hungry, he's hungry NOW. And he's not afraid to let you know it.)

We had a little proof of insurance issue. (When E. was in that car accident last month, he took the insurance out of the truck for the police report and never put it back.) You'd think getting another copy of the proof of insurance would have been easy. It wasn't. But we eventually got it.) Then we went back to the DMV yet again.

We walked out of there with new license plates and his temporary handicapped parking placards.

Success!

Physical Therapy

2010-09-08T16:44:00.001-07:00

E. had his "physical therapy evaluation" today.

But first, we had to "register." We were supposed to be at registration at 9:00, which would leave enough time to be upstairs in time for his half-hour physical therapy appointment beginning at 9:30. In reality, registration wasn't even done until 10:00. It consisted of waiting for over 45 minutes, going into a little office, giving the gal his driver's license and insurance card so she could make copies, and signing two pieces of paperwork. Physical therapy itself was about an hour too. Peanut was with us and since he's more of a hands-on rather than a sit-back-and-watch kind of guy, Peanut and I took a walk to the park while E. went back for his physical therapy.

That means you don't get a play-by-play. Or any great pictures. Dagnabbit. I hear I missed a great photo opportunity when E. had to try to balance on that half-sphere ball thingie (a BOSU ball I think is the technical name). Ahhh well, maybe next time.

More physical therapy appointments are up and coming. Another one on Friday, and two or three next week. E.'s also been referred for an occupational therapy evaluation. Occupational therapy might be helpful with some of his vision issues, like that little thing called reading. We're waiting to hear when that's going to take place.

An appointment with the radiation oncologist has been made for next Wednesday. Hopefully then we'll have a radiation plan too.

Oh, and the DMV is still on the "to do" list too. Aaaarrgggh!

Son of a Buck!

2010-09-07T23:17:00.000-07:00

Son of a Buck!

Son of a Bleepity-Bleep-Bleep.

Bleepin' Son of a Bleepity-Bleep-Bleep.

And an extra Bleepity-Bleep-Bleep thrown in for good measure,

for each of the 35 staples.

I guess staple removal isn't quite as pain-free as they led us to believe.

Matter of fact, after the first five staples were removed,

the nurse stopped to give E. "a breather."

His eyes were watering and he had sweat beads on his nose.

He calmly said to the nurse,

"Thanks, now let me hold myself so I don't pee all over the place."

"Come on, toughen up buckeroo," is all I could think.

You've been through chemo, radiation, kidney stones,

a pneumonia, an errant ingrown toenail,

the swine flu AND brain surgery (and that's just in the last year).

And now you wanna whine about some staples getting removed?

He shot me a look.

I bit my tongue.

This is the staple remover.

Not exactly the staple remover from Office Max I had pictured.

But whatever works, I guess.

First, the staples from the back incision were removed.

Then, the staples from the front incision.

At one point, I seriously thought E. was just gonna walk out

and leave about 9 staples in place.

For posterity's sake.

The nurse commented that the incisions are healing nicely.

Not that I've seen a lot of brain surgery incisions or anything,

but I'd have to agree.

The dried blood chunks aren't really scabs

as they aren't attached to wounds.

They are just blood blobs that dried on his skin.

Such a pretty description, don't you think?

I'm assuming they'll come off in the shower.

Maybe a washcloth would help, for a little abrasion.

"We're not abrasing nothing!!"

(Guess who said that?)

Good Weekend

2010-09-06T22:24:00.000-07:00

E. had a good weekend, a really good weekend. Today was probably the best day yet. He was able to go to the movies with the girls, which he always enjoys. He was also able to barbeque. Finally. It is no secret how much the man loves to cook. And it is no secret how much the boys love his cooking. There were some happy, and full, people in this house tonight.

E.'s pretty much ditched his walker already. He's down to one pain pill about every eight hours (despite the fact that he can take 2 pain pills every four to six hours). He's tapered off the steroids, which will hopefully bring his blood sugar levels under control more. Until that happens, I'll remain the "Insulin Injector." (It doesn't even scare me anymore. Woohoo! Now if only I could be as brave about the DMV. Yes, I know, I'm a big baby. And a procrastinator to boot. I still haven't ventured to DMV hell.)

Tomorrow, we see the neuro surgeon. Or actually, we see the neuro surgeon's nurse. It is our understanding that E. will be getting his staples out. Not sure what else happens at tomorrow's visit though. We're assuming it's just a check-up of sorts. We do know that once the staples are out, we can make an appointment with the radiation oncologist to get a radiation plan going, so that will be coming up next.

On Wednesday, E. has an physical therapy "evaluation." That will determine how much physical therapy he'll be getting (the doctor "ordered" two to three times a week for eight to twelve weeks). I think they're going to be surprised at how much progress he's made. I sure am! But then again, this is my first experience with brain surgery. (And hopefully my last!)

I'm not sure when he'll be able to drive again, but I have a feeling that is still a way's off. In the meantime, I'm just going to enjoy all the extra time I get to spend with the big lug. As much crap as I give him, I really do enjoy his company.

If anyone wants to take him to lunch, I'll happily chauffeur his butt there, shoot him up with insulin and leave him in your tending loving care. I promise not to be the helicopter spouse and hover overhead. Or even in the next booth. He'd probably like some time with his wise-ass buddies. Hint-hint.

* Oh, and just as a side note, E.'s vision is still pretty screwed up (hence, the no driving). Reading is out. Texting is also temporarily on hold. So, either call him (or me) or text me (and I'll happily relay the message).

A Couple of Pictures

2010-09-03T21:49:00.000-07:00

This is the circa 1970's hospital bed next to our big log bed. It looks even funnier in person ... reminds me of a child's toddler bed next to the parents' bed. It works though. E. likes having the ability to sleep at an incline to keep the pressure off his head, without having to rearrange pillows all the time (the ability to raise his foot also comes in handy with his swollen right foot, although he tends to prop it up with pillows like in the picture). Peanut likes having buttons to push and make Daddy seem like he's on a roller coaster ride. I like having the side rails up at night to ensure that he doesn't fall out of bed. (Notice the walker right next to the bed. And the football, of course. Peanut brings dad the football and wants to play catch, after showing off the three-point stance he learned from his brothers.) And yes, I realize that's a horrible mix of plaids and quilts, but what.are.ya.gonna.do? Focus on the handsome boys in the picture and you may not notice the plaids and colors working against each other. :)

Nothing better than watching a little "Sid the Science Kid" while snuggled up with your daddy. That's a great way to start the morning! Peanut even brought his bowl of Cheerios into bed to share.

Some Random Updates

2010-09-01T22:35:00.000-07:00

The head: It continues to heal little by little. E.'s got an appointment next Tuesday to get his staples out. Can you believe how quick that happens? He's still getting some whop-dinger headaches, but only takes minimal pain meds. He's also suffering some yucky bouts of nausea (not related to the pain meds). Sleep comes in short spurts (also affected by the midnight and 4:00 a.m. wake-ups for meds), but the mid-afternoon nap seems to help.

The arm: E.'s right arm continues to be swollen and tender from the infiltrated IV and the superficial blood clots. It is especially sensitive around the wrist area, which makes putting weight on it while using the walker difficult. A re-check with our primary care physician today confirmed that the blood clots are probably superficial as they are below the elbow (anything above the elbow is much more concerning). Since blood thinners and/or anti-inflammatories are not an option, he'll have to settle for warm compresses and elevation.

The foot: The foot, you ask??? Yes, the foot. After the initial physical therapy in the hospital, E. has been complaining about pain in his right foot. Concerned about blood clots, we visited with our primary care physician today. Turns out, it's "plantar fasciitis," which involves pain and inflammation of a thick band of tissue that runs across the bottom of your foot - connecting your heel bone to your toes. The bottom of E.'s foot is swollen and VERY, VERY sensitive. Again, because of the recent brain surgery, the typical medications cannot be taken. It was suggested he ice his foot several times a day and elevate it as much as possible. Generally speaking, it will heal in 8 to 10 weeks.

(So, are you picturing this yet? E., head full of staples, trying to shuffle along in his walker with a bum right arm and a bum right foot? It may not be pretty, but it sure isn't stopping him.)

The blood sugars: E. wound up being released from the hospital with the long-acting insulin, but not the regular insulin. We have been unable to keep his blood sugars in that "below 200" range which is optimal for proper healing, so we paid a visit to our primary care physician. Like we expected, she prescribed some regular insulin which will be given according to a blood sugar level scale. The amount of units given (of both the regular insulin and the long-acting insulin) will have to be tweaked regularly, with the steroid doses fluctuating like they are.

Physical therapy: E. is supposed to be getting physical therapy two or three times a week for eight to twelve weeks. That is what is prescribed. It has not started yet though because insurance authorization is required first, which may take a week or ten days. Crazy. In the meantime, E. is getting around the house quite well and I've even caught him walking without his walker a time or two (which drives me insane!). We've taken a couple of walks down the street. I walk alongside him and his assistant, Peanut, helps by pushing the walker along.

Handicapped parking placard: E.'s doctor authorized him to get a temporary handicapped parking placard. Although E. is not thrilled with the whole idea, I reminded him of the brighter side: front row parking at Wolfpack games! He's already making tailgating plans, so I know he liked the thought of that! The doctor filled out the applicable DMV authorization form. Now I just have to go to DMV, submit the form and get the placard. I dread going to the DMV. I hate the DMV. I am scared of the DMV. But I will be brave. As an added note, while the truck was parked in the hospital parking garage, someone stole the front license plate off the truck! (It appears that they also attempted to steal the rear plate, as the license plate frame is missing, and so are several screws.) I now have to fill out some "Lost or Stolen License Plate" form at DMV as well, and return the remaining plate in exchange for new plates. I did say I would be brave, didn't I? I think a visit to DMV requires more than bravery though.

Attitude: E. may be stubborn and ornery, but he's got an attitude that can't be beat. He never complains about a darn thing. He still dishes it out like always (and gets it back in return). We still laugh. A lot. And these brain tumors? "Just another bump in the road." With an attitude like that, how can you not follow his lead? I'll tell you what ... I fall in love with this man over and over again, each and every day.

Home Sweet Home

2010-08-31T05:10:00.000-07:00

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

2010-08-29T20:39:00.000-07:00

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

2010-08-28T12:34:00.001-07:00

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

2010-08-28T12:00:00.000-07:00

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

2010-08-28T09:11:00.000-07:00

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

2010-08-27T19:53:00.000-07:00

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)

2010-08-27T10:54:00.000-07:00

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.)

Friday Morning (8/27) Report

2010-08-27T07:31:00.000-07:00

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

2010-08-26T20:05:00.000-07:00

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)

2010-08-26T13:58:00.000-07:00

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

2010-08-26T09:01:00.000-07:00

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

2010-08-25T20:52:00.000-07:00

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

2010-08-25T06:29:00.000-07:00

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

2010-08-25T00:19:00.000-07:00

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

2010-08-24T18:08:00.000-07:00

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

2010-08-23T15:46:00.000-07:00

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.

MRI Results

2010-08-22T15:20:00.000-07:00

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.

Morbid Humor

2010-08-22T09:47:00.000-07:00

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.

Curve Ball???

2010-08-21T14:58:00.001-07:00

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

2010-08-11T14:59:00.000-07:00

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

2010-08-11T14:43:00.001-07:00

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.

Surgery Off Again

2010-07-27T13:40:00.000-07:00

Well, at least the surgery we were planning on is off again. It looks like there may be a different kind of surgery in E.'s future instead.

We just got off the phone with Dr. M, the surgeon at MD Anderson.

He staffed E.'s case with the Multi-Disciplinary Team this morning, which is essentially getting a consultation with 40 different practitioners in the cancer arena. All biopsies were "free of tumor," which is GREAT news. Rather than do the esophagectomy surgery though, the recommendation was to do a "dissection of the right supraclavicular node."

What that means is that they want to remove that once-positive lymph node in the right shoulder area and dissect it to make sure there is no more cancer. Even though that lymph node has decreased in size and was no longer "hot" on the PET/CT scan, there is still a chance that there could be microscopic cancer there.

The Team couldn't decide if surgery would be the best option in E.'s case. While they were impressed with E.'s amazing response to treatment, I'm assuming the fact remains that the scientific data is simply lacking. It was reiterated several times that right now, E. is cancer free. The question for the doctors remains, "How are we going to keep you cancer free?" The general consensus from the Team was to "WATCH" E. with regular PET/CT scans for any possible recurrence.

If that effin (yes, this lymph node is worthy of the f word with a capital F) lymph node tests negative, that would be the plan . . . regular PET/CT scans. If for some reason it tests positive, E. could receive radiation specifically targeted to that lymph node.

As it was explained to us previously, if there is a local recurrence in the future, an esophagectomy could be performed at that time. Likewise, if there is a distal recurrence, surgery would never be an option.

While a bit discouraged initially, we are shifting gears and look at these changes with a positive attitude. This surgery will be minor in compared to what we were expecting, with a much shorter stay in Texas and a MUCH SHORTER recovery. It's all good.

Texas recap

2010-07-22T14:40:00.000-07:00

If you don't want to wade through all the nitty-gritty details, I won't make you. The end results are this: There is still NO EVIDENCE OF DISEASE. So, as it stands right now, E. continues to remain cancer free. Woohoo!

But if you want a recap of our trip, here you go . . .

We arrived Sunday evening and were greeted by the typical summer heat and sweltering humidity. Summers in Houston ... I don't know how people do it. It makes me all the more thankful for air conditioning.

E. had his anesthesia assessment appointment Monday morning. They review his medical history to make sure nothing has changed, check on his medications, take his vitals, and make sure he understand his pre-op instructions. Also, since he hadn't had an EKG in a year, they threw in one of those for good measure too.

When we reviewed the printout of E.'s scheduled appointments, we noticed that there was no lab work scheduled. That struck us as odd since E. has had blood drawn on every previous trip. While E. was getting assessed for his anesthesia, I ran up to the oncologist's office to find out about the lab work. Turns out, the lab work had been requested in the computer, but nobody had ever signed off on the order, so we got that all cleared up and got E. scheduled for a blood draw. While there, I was also informed that our appointment that afternoon with the oncologist had been cancelled since there was no point in meeting with him until after the results of the tests and scans were available. Funny, that's exactly what I called about months ago. The receptionist suggested rescheduling for Thursday (as the GI Clinic only has office visits on Mondays and Thursdays), but I explained that wouldn't work for us as we were leaving on Wednesday. In the end, we just kind of left it open, which didn't feel entirely comfortable. I supposed we could do a phone consultation if something needed to be discussed. Or I suppose we could catch him on another trip.

Since E. was scheduled for an endoscopy (a scope down the throat to check out the esophagus and stomach, as well as collect a few biopsies) early Tuesday morning, we knew from experience that he would have to switch to an all liquid diet for 24 hours prior to the surgery. Most patients simply can't eat for 6 or even 12 hours before, but E.'s slow digestion has proved that is not sufficient. If any liquid remains in the stomach, it can be suctioned out, but if any solid remain in the stomach, the surgery is terminated and rescheduled. Therefore, E.'s diet on Monday consisted of a cup of sugar free jello for breakfast and a bowl of beef broth for dinner. According to the schedule, the day would follow the same timeline as his previous endoscopy ... check-in at 7:00 a.m., have the procedure at 8:00 a.m. and be in recovery at 9:00 a.m. As you might recall from his last endoscopy in March (or I may have conveniently failed to mention it), E. went ahead by himself while Peanut and I stayed in the hotel room and slept in. I figured we'd be there in plenty of time to pick him up. Turns out, he was done by 8:00 and the nurses called me MANY times (my ringer was turned off) trying to track me down. Vowing not to make that same mistakes, Peanut and I accompanied E. to his endoscopy at 7:00 a.m. Then we waited. And waited. And waited. He didn't even go back for his procedure until after 9:00! I think the joke was on me. On a good note, the preliminary report from the endoscopy looked good. There wasn't any sign of cancer. The GI did biopsy a few of the previous cancer areas, as well as some newly formed polyps in the stomach (we were told it was not uncommon for polyps to develop while on the antacid medication). Everything looked normal, but we will have to wait for the results of the biopsies for confirmation.

E. was then scheduled for his PET/CT scan on Tuesday afternoon (and according to the instructions given to us, he could eat nothing for six hours prior to the procedure, so still no food for E.). On our way to the Mays Clinic for the PET/CT scan, we stopped at a computer kiosk to confirm the 2:00 p.m. appointment time. It was there that we noticed that tomorrow's 9:30 a.m. appointment with the surgeon was rescheduled to 1:30 p.m. So while E. was waiting for his scan, I ran over to the surgeon's office. To make a long story short, the doctor's schedule had to be changed and appointments had to be rearranged. We were supposed to have been called, but weren't. Oops. The front desk gals suggested we check in at noon and so we could be one of the first patients of the day for the surgeon.

No sooner than E. was done with his PET/CT scans were we in the hospital cafeteria. For his 48 hours of (almost) fasting, E. was craving some fried chicken. Lo and behold, the cafeteria had fried chicken! And mashed potatoes, and macaroni and cheese, and cornbread . . . yum.

The entire trip culminated with the visit to the surgeon on Wednesday. That's where we would know the results of all the tests, all the labs, all the scans. Everything but the biopsies. Talk about anxiety!

There are no sweeter words to a cancer patient or their loved ones than the words we heard . . . no evidence of disease. The surgeon then reviewed E.'s case with us again. Technically, E. is not operable because of that pesky supraclavicular lymph node (in the shoulder area) that tested positive. But, E. is an "unusual patient." Right now, he is "clear as a whistle" and there is a possibility that he is cured. Unfortunately, the chance of recurrence is high ... as high as 70%. The surgeon further stated that most recurrences (80%) occur within the first two years. (Two years from diagnosis? Two years from treatment? Two years from surgery? I'm not sure.) Because not many Stage IV esophageal cancer patients undergo surgery, there is no scientific data in regards to the surgery. Theoretically, according to the surgeon, surgery provides the advantage to minimize at least a localized recurrence. That makes sense. If the body parts are eliminated, the cancer can't come back ... at least not there. As far as a distal recurrence, who knows. The surgeon indicated it was a difficult decision to make. If E. opts not to have surgery, the medical professionals would adopt a "wait and see" approach. E. would return to MD Anderson every 3 months or so for further PET/CT scans. If anything were to show up, they would address it at that time. If E. were to have a local recurrence (meaning in the area of the original cancer), a "salvage esophagectomy" could still be performed. If E. were to have a distal recurrence (in any other area besides the area of the original cancer), surgery would be completely off the table.

As scary as it is, we are moving forward towards surgery. We want to do everything we can possibly do to to beat this beast called cancer.

Happy Summer

2010-07-03T22:50:00.000-07:00

Summers are meant to be enjoyed.

That means backyard barbeques, drive-in movies,

and LOTS of time at the pool.

Radiation Complete for E1

2010-06-29T21:26:00.001-07:00

The long awaited day finally arrived . . . E1 (Grandpa) is done with his 44 radiation treatments. According to him, the end didn't come a moment too soon. He received a certificate documenting his accomplishment and we all celebrated his graduation by going out to breakfast.

E1 (Grandpa) has a check-up scheduled in six weeks, basically just to make sure the side effects are clearing up, but then doesn't have another doctor appointment for six months. At that point, they'll do another blood test to make sure his PSA is back to normal. Seems a bit strange to me that there isn't a need for an earlier appointment or the need for an updated PET/CT scan, but I guess that's the way they do it when it comes to prostate cancer. In other Grandpa news, we've convinced him to get his cataracts taken care of, so he has a series of appointments for that starting in mid August . . . pre-op appt., followed by surgery for eye #1, then post-op appt. ... pre-op appt., followed by surgery for eye #2, then post-op appt. Let's see, what else can we do? He does still need a follow-up endoscopy. Oh, and there is still the matter of Grandpa's bum shoulder. And he could benefit from hearing aids. Before it's all said and done, we'll have him as good as new.

E. has been officially retired for 10 days now. The folks from work had a nice little farewell gathering for him, and I think he thoroughly enjoyed himself. I wish I could say that he's been kicking up his feet and relaxing ever since, but that is far from the case. Grandpa's radiation treatments took up each weekday morning and it seems as if the kids have had one thing after another. We keep waiting for things to slow down some, but for some reason, I don't think that will happen anytime soon.

On the health front, E. has been dealing with some very uncomfortable stomach issues lately. Aside from the stomach aches and pains, he's had the raunchiest smelling burps you ever did come across. Of course, any time there is a digestive issue, I immediately freak out. In googling his symptoms (What ever did we do in the days pre-Internet?), I learned a possibility could be food, particularly food high in protein, sitting excessively long in the stomach due to slow digestion (we know slow digestion has been an issue for E. post chemo and radiation). The situation could be exasperated by other factors, such as diabetes (ding-ding). Another possibility could be a stomach bacteria or parasite. And yet another possibility could be a gastric type cancer. My freak-out mode is still in full force.

We go back to Texas on July 18th . . . so close, yet so far. Ugh.

Retirement Countdown

2010-06-06T20:37:00.001-07:00

E. has a total of 10 more work days. Yup, you read right . . . TEN. His last day of work will be June 18th and his "official" retirement date will be June 19th. 30 years (+ a few) and out baby!

Having him home for 14 months spoiled me rotten. It was an adjustment (more so for me probably than for him) when he went back to work part-time, but we managed. Then he went back to work full-time. Since then, our time together has been minimal. Waaaaaahhhh! He's out the door early in the morning and when he gets off work, I'm usually on the go, being a taxi driver to once place or another. Sometimes we hook up at a kid's baseball game, but it's not like it is quality time for him and I. I know I'm whining, but man do I miss him.

I'm not sure we'll get much uninterrupted time together post-retirement as it coincides with summer vacation, but at least we have a much better shot. Other than enjoying each other and the kids, no big plans yet. We'll head back to Texas on July 18th and go from there.

Oh, and have you heard? Once E.'s health stuff is all taken care of, he plans on embarking on a second career. He plans on putting that Master's Degree to use, getting his clinical hours in, passing his boards (I think that's what they're called) and becoming a Licensed Clinical Social Worker. Good thing I love him so. :)

S.

E1's Over the Hump

2010-06-04T22:11:00.000-07:00

E1 (Grandpa) has now completed 27 radiation sessions. That means only 17 more to go. He is definitely on the countdown as he will be so glad to be done with this "mess."

A Little E1 Update

2010-05-17T21:16:00.000-07:00

Grandpa (E1) has now finished 14 radiation treatments . . . only 30 more to go. He's experiencing some side effects, but claims it's nothing he can't handle. You know how those stubborn men are!

The folks at the radiation center are nothing but nice. And very efficient too I might add. We have never had to wait more than 10 minutes. Of course, 10 minutes plus the 15 minutes of radiation time translates to almost a half hour that I have to entertain Peanut in the waiting room. Since everyone has standing appointment times and are usually there for a long duration of radiation sessions, we see the same faces every day. We've established sort of a camaraderie and they think it is quite entertaining to watch me chase Peanut around, trying to prevent his path of destruction.

Grandpa is not only hanging tough with treatment, but also hanging tough in our House of Chaos. That might just be a bigger accomplishment.

E1 Radiation has begun

2010-04-28T21:39:00.000-07:00

The radiation "dry run" was apparently a success for E1. He got to start radiation today. Radiation takes a whoppin' 10 minutes or so. Of course, the radiation office is on the exact opposite side of town from us, so it takes approximately 45 minutes to drive there. All in all, it's a two-hour adventure. Throw in a yummy breakfast out and our entire morning is booked.

E1 will be getting radiation every weekday (Monday through Friday, excluding holidays) at 9:15 a.m. He has that slot reserved until the end of June, when he'll hopefully have all his radiation sessions complete. That's a tentative date though because if E1 has to miss any sessions due to side effects or anything else, those days get tacked on the end. Reminds me a lot of snow days at school . . . so fun at the time, but not so fun when summer rolls around and you have make-up days cutting into your summer vacation.

Every Thursday, E1 will meet with the doctor after his radiation session. Much like E. did, the weekly check-in allows the doctor to monitor progress, check for side effects and answer questions. A list of potential side effects was reviewed with E1, although they don't typically begin until between the 4th and 5th week of radiation. A few patients experience side effects right from the start and a few patients never experience side effects at all. We're hoping that E1 is in the "no side effects" or "minimal side effects" camp.

No CTs or other tests will be performed to monitor progress. Six weeks after the last radiation session, E1 will return simply to make sure any side effects are dissipating and his activities are returning to normal. Six months after that, he will return again for blood work and that is when his PSA will hopefully be in the normal range, showing that treatment was successful. So, from the way I understand it, we won't really know if everything was successful and E1 is cancer free until February of 2011. Wow, that's a long time. We've just got to be confident all is well.

E1 CT Done

2010-04-20T19:55:00.000-07:00

E1 finally got his CT done today. He also got a mold impression done today. From our understanding, E1 was positioned just right for the radiation to zap the cancer and then a mold was made of that exact position. That way, he'll be in the right position for every radiation session.

E1 will return for a doctor appointment on April 27th to finalize the treatment plan and have a "dry run" of the radiation treatment. Hopefully then we'll finally get a radiation schedule.

E1's cancer journey thus far has been frustratingly slow.

Here's his timeline so far . . .

February 19th - biopsy

March 5th - doctor appointment

April 8th - copper targets inserted

April 20th - CT

April 27th - doctor appointment and dry run of radiation

The earliest E1 will begin radiation is April 28th. So, from the point of the biopsy (not even from the point of his first doctor's appointment) to start of treatment will be well over 2 months!

In contrast, E. had his first doctor appointment (simply to complain about difficulty swallowing) on February 9th. A series of tests and appointments followed. He then began radiation and chemotherapy (the Reno treatment plan anyways) and finished it all on April 11th. So, from the point of his first doctor's appointment to the END of treatment was 2 months!

Frustrating!

E1 Update

2010-04-19T19:49:00.001-07:00

Things don't always go as scheduled . . .

E1 did get his "copper targets" inserted as scheduled . . . except he got four instead of three. We're not sure exactly what that means.

The scheduled CT didn't work out quite as well. He was there as scheduled, but unfortunately, the machine "broke." "Run some errands and come back in an hour," they said. Errands? No errands to run when you live two hours away. Off to lunch they went. An hour later came the phone call informing them that the machine would not be up and running today and they'd call next week to reschedule his appointment. Nothing like a trip to Reno for, well, nothing.

The call came today at 2:30 pm . . . his appointment was rescheduled for today at 3:30 pm. Did I mention he lives two hours away? "Oh, I guess we can reschedule for tomorrow then."

So, E1 is traveling back to Reno tomorrow and hopefully he'll get his CT scan and all that goes along with it. Then maybe, just maybe, we can get his radiation schedule and get things moving.

Oh and remember how it was anticipated that he'd have to live in Reno for the nine weeks of radiation? Well, at the last appointment, the doctor mentioned FOURTEEN weeks rather than nine. There are apparently 44 sessions of radiation . . . I think we erroneously assumed that he would be receiving radiation five days a week; hence the 9 weeks total. Quite possibly, he will be receiving radiation only three days a week, which could stretch things out even past fourteen weeks. We'll let you know as we know.

E. Updates

3 Years

Oncologist Review

MRI Results

MRI Day

Brain Tumor Review Board

Review with Neurologist

More Questions Rather than Answers

Good News and Not-So-Good News

Testing Day

Peanut and Dad

Grandpa Update

Grandpa's Discharged

Grandpa's Surgery

Grandpa

Haircut Appts

Reflections

Our Family

Pool Time

Good Mix

Finally an Update

Some Park Action

Symptoms?

One Down, One Up

Two

"Changes"

Long Day of Tests

Neurologist Appt.

Borrowed Time

Referral to a Neurologist

Abnormal EEG

Visit with the Oncologist and EEG

Neuro Surgeon Appt

Who's He Look Like?

Happy New Year!

A Little Lovin'

Appt. Formality

Appt. with the Oncologist

Christmas Came Early

Day of Tests

Texas Bound

Thankfulness

Peanut Enjoying Fall

Help Needed - COVERED

The Nut

Neuro Surgeon Follow-Up

Infectious Disease Doc

"Bloody Monday"

Cyberknife Complete!

Cyberknife #2 Complete

Trained

E.'s Home

Tidbits of Good News

Still in the Hospital

Cyberknife's Still a Go

Staph Infection

A Night Away

Infected Port

Possible Infection?

A Plan!

Flu Rounds

Still No Radiation Plan

Appt. Rescheduled

Sick with the Flu?

DMV Success

Physical Therapy

Son of a Buck!

Good Weekend

A Couple of Pictures

Some Random Updates

Home Sweet Home

Sunday (8/29) News

In Pictures

Discussions re: Discharge

Saturday (8/28) Update

Blood Clots

A Walk(er)

Friday Morning (8/27) Report

Regular Room

Afternoon Update (8/26)