"Wanna play catch daddy?"

So, it wasn't exactly playing catch with a ball ...

it was more of a "I catch you" and

then "you catch me"

(which most of us would call "tag," but not Peanut).

Throw in a few games of Duck, Duck, Goose

and it was a fun day

waiting for brothers' soccer game to start.

Peanut's squeals of laughter and delight

are some of the best sounds ever.

His laugh comes straight from his belly

and is genuine through and through.

I love how contagious it is.

Radiation Oncologist

E. had his follow-up with the local Radiation Oncologist today.  The doctor reviewed the CD's and reports we brought back with us from Texas while we patiently waited.  He entered the room exclaiming to E., "You're amazing!"  "Everything is looking good."  Those are some pretty great things to hear.

E.'s weakness was discussed.  The doctor explained that the location of the right frontal lesion could be responsible for the left leg and arm weakness and the location of the right posterior lesion could be responsible for the left eye weakness.  Dr. T. then examined E. and noted that there was "no papal edema," so there was no swelling in the eyes which might have been responsible for vision difficulties.  He put E. through a series of maneuvers, which E. didn't seem to have any problems completing.  Dr. T. remarked that even though E.'s left side may be weaker than the right, he still found that E. had adequate strength overall.  He wasn't concerned, but agreed that physical therapy and occupational therapy might help strengthen the left side.

Another MRI will be scheduled here in Reno in September.

S.

Neurologist Appt.

E.'s semi-annual follow-up with the Neurologist was uneventful.  It appears that his meds are doing the job they need to do with preventing the seizures and so his prescriptions were refilled without making any changes.  

Weakness was noted on E.'s left side (he has a "blind spot" of vision out of his left eye and his extremities on his left side are weaker than his right).  Why the weakness?  Well, it could be the location of the original tumors in the brain, or the brain surgery itself, or the radiation treatments and the ongoing changes from the healing.  Physical therapy and occupational therapy were again suggested to help strengthen that side, and so those were prescribed as well.

Texas Results

My plans for getting a few extra hours of sleep?  Out the window.  Peanut woke up when daddy was getting ready to leave the hotel room and he refused to go back to sleep.  Crudola.  It was still dark outside, for pete’s sake.  E. reported that his PET/CT was uneventful and there was very little waiting time since he was obviously one of the first appointments of the morning.

We made it to the 10:00 brain doctor appointment with plenty of time to spare.  Dr. L. didn’t beat around the bush and as soon as she walked into the room, she said, “The MRI’s are looking good.  They are stable.”  You can’t imagine how comforting those words are.  She compared the current MRI to the one done in Reno in March and said, the MRI in March looked “more bubbly in the back” and looks “a little more condensed now.”  When I asked if that was a good or a bad thing, she said she couldn’t say, but did say that she thought it was “just the evolution after the radiation.”  That sounds good to me.  She said the areas in the front of the brain look very similar in the two MRI’s, which is also a good thing.  She further stated, “I don’t see any nodular problem.  If there was a little mass instead of being more diffused, that would be a problem, but I’m not seeing that.”  She stated that there were no nodules forming and no increased enhancement or brightness.  All good stuff.

Dr. L. examined E. and noted that his left leg is a little unsteady and weaker than the right.  His vision is also affected, particularly in his left eye ... most likely because of “what’s in the brain.”  We wouldn’t exactly describe Dr. L. as warm and personable, but thought she was the friendliest she’s every been today.  She ended the visit by saying, “Things are pretty good.”  Pretty good indeed.  She recommended that E. get another MRI in three months in Reno, and then follow-up again in six months at MD Anderson.  In the meantime, she strongly encouraged E. to report any and all changes that he notices.

We then headed over to see Dr. A., the medical oncologist.  I think we wound up waiting 2.5 hours for a 5 minute appointment.  I am not kidding.  Dr. A. always cracks us up because he is a small statured man who is very soft spoken ... and he is always surrounded by an entourage.  It is like he is famous celebrity surrounded by bodyguards, fans and paparazzi.  In a sense, I guess he is famous, just in the cancer world.  As you may recall, he ranked in the top 1% of cancer doctors, so I’m sure many people want to learn from him.  Anyways, he flew into our room and remarked that the “PET looks clear.”  Woohoo!  He also commented that the little activity in the brain looks better too.  I asked about the possibility of an “N.E.D.” (“no evidence of disease”) status as those words once meant so much, but we haven’t really heard it mentioned since E. had his mets to the brain.  Sure enough, with the “activity” going on in E.’s brain, (and even though the MRI’s have been “stable”) an NED status eludes us.  Dr. A. then kinda shrugged his shoulders and rolled his eyes at me ... “What’s in a label anyways?” he said.  Ha!  Labels shmabels.  Looks like I have to kick NED to the curb.  He was a nice boyfriend while he lasted but I don’t have time for him anymore.  

We’re pretty thrilled with these words now ... “The PET/CT is clear and the MRI is stable.”  

So, another MRI in Reno in September and then back to Texas next December for the whole shabang.  We got this.  Or at least it feels like it right now.  And it feels good.

Texas testing

We made it back to Texas last night where the hot weather and humidity were eagerly awaiting us.  It was 92 degrees at 8:30 at night and the humidity was killer.  Can you say limp hair, runny make-up and sweaty pits?  Ah yes, nothing a pitcher of margaritas in an air-conditioned Pappasito’s couldn't help though.

The day was low-key as E. didn’t have to check-in for his 7:30 MRI until 6:15 p.m.  We slept in and spent some time with Peanut in the hotel pool.  We then headed over to the business office to deal with our outstanding bill.  You see, after returning from MD Anderson in December, we discovered that our insurance company was claiming that MD Anderson was suddenly no longer on the preferred provider list and that E. could have supposedly gotten the same quality of services locally (cough cough sputter sputter).  Based on that, the insurance company was only paying a very small percentage of the very large bill.  We began the appeal process and subsequently had to jump through many hoops.  It took months of back-and-forth communication between us, the insurance company and various medical professionals, but we finally received notice last week that we “won” the appeal and the insurance company would be paying MD Anderson retroactively at the rate we had expected all along.  Whew!  Anyways, after visiting with the kind folks at the business office, they agreed to make note in our file (so we wouldn’t be referred to collections) and resubmit the December invoices to the insurance company.  While there, we attempted to confirm that this current visit was also approved by the insurance company (which we were assured it would be - haha).  No such luck.  No pre-approvals had been received and E.’s MRI was mere hours away.  Phone calls were made and messages left; hours went by and it finally came together (or so we are told ... we’ll know for sure when the bills come in, I suppose).

The MRI went off without a hitch.  We then realized that E.’s check-in for his PET/CT was at 6:30 the next morning.  Now, typically that isn’t a problem, but E. forgot his reading glasses and without them, he can barely read a billboard.  Every appointment requires paperwork to be filled out and without his glasses, E. is pretty much useless.  All this translated to mean that Peanut and I would need to get up at 5:30 a.m. (3:30 Nevada time!) to accompany E. to his appointment so I could be his personal secretary.  Ugh!  We went over to the nuclear medicine department and pled our case.  Lo and behold, they allowed us to fill-out the paperwork early.  Woohoo!  That meant Peanut and I could get a few extra hours of sleep.  

Countdown to Texas

We're headed back to Texas on Tuesday.  Wednesday and Thursday are filled up with appointments for lab work, an MRI, a PET/CT, and then appointments with the oncologist as well as the brain doctor.  We fly home Thursday night.

Scanxiety has crept in.

S.

March 2012 MRI Results

E. had his latest MRI on Friday.

We met with the radiation oncologist today.

He walked in and immediately said, "Well, there's a little bit of change." I think I stopped breathing. He went on to say that the change might be consistent with "ongoing evolution of scar tissue." I exhaled a little. That was good, right? He further stated that things looked "faded and fuzzy" (which we have learned is good). E. asked if anything looked nodular (which we have learned is bad). Nothing nodular. And even better, there was nothing new to look at since the last scan. No new stuff growing. We're still watching what the old stuff is doing. So, we're in a holding pattern of "watch and see."

Inhale. Exhale. Big sigh of relief.

Next scans coming up in June.

S.