A Little Lovin'

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

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

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.

S.

Christmas Came Early

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

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

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

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

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

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

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

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

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"

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!

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

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

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

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.

S.

Tidbits of Good News

* 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

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

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

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

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

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?

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!

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

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.

S.

Still No Radiation Plan

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.)

S.

Appt. Rescheduled

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?

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

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

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!

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

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

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

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

Monday turned out to be a long day of waiting.

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

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

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

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

We waited for the medical doctor some more.

And some more. And some more.

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

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

We waited for all the discharge paperwork.

We waited for a wheelchair.

And then we were finally on our way!

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

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

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

Sunday (8/29) News

There really isn't any new news.

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

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

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

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

In Pictures

He doesn't look half-bad bald.

The swelling has really gone done in his right eye,

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

And could get worse before it gets better.

A little better picture of the side view.

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

The front incision with 19 staples.

See the globby blood blobs we were talking about?

And the back incision with 16 staples.

A little "cleaner" looking.

The girls are teasing him . . .

He's bald and he's on steroids,

now all he needs is an earring. :)

Discussions re: Discharge

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

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

Saturday (8/28) Update

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

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

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

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

Blood Clots

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

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

A Walk(er)

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

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

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

S.

Friday Morning (8/27) Report

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

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

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

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

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

Regular Room

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

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

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

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

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

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

Afternoon Update (8/26)

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

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

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

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

Thursday Morning (8/26) Report

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

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

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

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

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

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

and also a matching stapled incision in the back -

which is less visible in the photo.)

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

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

Still in ICU

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

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

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

Until tomorrow then . . .