Saturday, September 27, 2008

Two Days in Bethesda

Lee Ann and I traveled to Bethesda, Maryland, in the wee hours of the morn on Thursday, September 25. Arriving on time at BWI at 8 a.m., we set off using the DC Metro's excellent public transportation system to get from point A to point B. After being most pleasantly surprised with an extremely early check-in at the hotel in Bethesda, I decided to head over to the NIH to see if I there was any way to get my already-scheduled MRI moved from 6 p.m. to sometime sooner.

Prior to getting an MRI, you have to be vial of blood to check serum creatinine levels, I think. I probably should ask about that one of these days. It's a bit like a trip to the BMV. You check in, get a number and watch the board!

Then it's off to the medicolegal section to put in my request to pick up a copy of the MRI that I can take back to local doctor for his review.

The MRI gods must have been pleased because when I went to inquire about an earlier scan, they had an opening at 2 p.m. I locked it in and went to hang out in the main clinic lobby. Arriving back at the appointed hour, I was scanned and on my way back to Lee Ann at the hotel by 3 p.m.

Our good friends, Jace and CeCe Wieser (Jace and I have been fast friends since 7th grade), made the trek in from Vienna, Virgina, to spend the evening with us. It was a very relaxing evening and the perfect distraction.

Terry (admonishing Lee Ann to hurry up and take the picture) with Jace at Mon Ami Gabi in Bethesda. Try the garlic spinach as a side!

Look! Pretty girls! Lee Ann and CeCe.

It was a rainy Friday as we departed the hotel for the NIH and our 10 a.m. visit to the Neuro-Oncology Clinic on the 12th Floor of the Mark O. Hatfield Clinical Research Center. Complimentary shuttle service is provided around the expansive NIH campus, but the direct shuttle was SRO so we ended up getting the scenic tour, arriving four minutes late. I think they keep pretty close track of that because a sh*tload of waiting followed. They get you all excited by calling you back almost immediately, but that is only to take your vital signs and the like. Since we had been in a rush, I was hot and my blood was pumping. They took my blood pressure three times before finally accepting that I wasn't about to have a heart attack, I was just in a hurry. The waiting room was packed when we arrived, but soon cleared out as people were moved back to the various rooms to await their turn with the doctor. It was after noon before Lee Ann and I were finally called back to wait some more.

Back in the observation room, the ever-patient patient...doubling as a billboard for the LiveStrong Foundation.

I was visited first by one of the nurse practitioners, Colleen, who took down my history since the last visit and then performed a number of neurological exams. Even Lee Ann got to help by operating the overhead lights while the NP checked my eyeballs. There is lots of pushing and pulling involved, whacking on my joints with a hammer, closed-eye nose touching and heel-toe walking in the hallway.

Colleen left to go load my MRI into the computer for Dr. Fine to review and share the results of my neurological tests with him before he met with us. After another half hour of waiting, Colleen returned to say that Dr. Fine had another patient in front of me so it would probably be another 30-45 minutes. By now, it was after 1 p.m. and I had not had anything to eat since about 7 a.m. I made use of the additional time by making a food run and picking up my medical records. Our flight was scheduled out of BWI at 4:40 p.m. We had already missed the NIH's airport shuttle and the Metro was not an option simply because it would take too long. We resigned ourselves to the fact that we would either have to cough up for a cab or just stay over another night if needed.

Dr. Fine entered the room at about 1:45 p.m., as promised, and got down to business. He compared Thrusday's scan to the previous one and the "enhancement" occurring in my brain continues. It is not massive, but it is indeed remarkable, and noticeable to the untrained eye. He reiterated from our phone call last week that his experience tells him that this represents progression and not necrosis. The options, as he saw them, were pretty much the same as he had outlined then: clinical trial, surgery followed by Avastin, or start Avastin now without surgery. He really didn't express an opinion regarding surgery other than to say that's it's always good to start treatment with less tumor than more (surgical risks aside).

So while I didn't leave with a ton of new information, it was good for Lee Ann to be there and here it straight from Dr. Fine and have the opportunity to ask questions.

Although we received a hotel and meal reimbursement totaling $110, we had to give $65 to the cab driver to get us to BWI in time to make our scheduled return to Indianapolis. Our flight ended up being delayed about 30 minutes so everything worked out fine. We landed in Indy and headed straight to Lutheran High School on the south side of Indianapolis to watch the Arsenal Tech Titans (Dale's team) defeat the Saints 28-23. When Lee Ann and I headed to the car with eight seconds left, Tech was up 28-17. It would seem that on the last play, Tech's punt was kicked into another Tech player and it was scooped up for a TD by the other team. Always stay until the end!

Next Stop: Dr. Edward Dropcho on Tuesday, September 30. Then it's time to pick either the red pill or blue pill and enter The Matrix once again.

Parting Shot
Dr. Howard Fine and Terry. Look at the photo of the two of us posted on April 30 and you will note that he is wearing the same tie!

Wednesday, September 24, 2008

Squeezing My Mind Grapes

Please allow me to present the gifted neurosurgeon Scott Shapiro. Dr. Shapiro is the Robert L. Campbell Professor of Neurological Surgery at Indiana University and Chief of Neurosurgery for Wishard Health Services. (Photo: Lee Ann Harper, Partners in Housing Development Corporation)

Dr. Shapiro resected, i.e. removed, my tumor on July 12, 2007, and met with Lee Ann and me today (Sept. 24) to talk about my surgical options this time around.

If you are a fan of Lance Armstrong, or just top notch brain surgery, Shapiro is the neurosurgeon who in 1996 removed Armstrong's two brain tumors and was later featured in Armstrong's book, It's Not About the Bike.

Tomorrow, we're off to the National Institutes of Health's National Cancer Institute's Neuro-Oncology Branch (say that five times fast) seeking more knowledge...things they would not teach us off in college.

Sunday, September 21, 2008

Into Each Life Some Rain Must Thump

Monday, August 25, 2008, 2:22 p.m. ET: E-mail to Lee Ann: “My vision is Wacky…”

Exactly 14 months and one day after my brain first exploded, the fun appears to have started again.

Just two days after returning home from a fabulous sailing trip to Martha’s Vineyard to celebrate Lee Ann’s birthday, the lug nuts started coming loose again.

In the middle of a conversation at work, the vision in my left eye suddenly went haywire. Although the symptoms were similar to what I experienced on June 24, 2007, I remained alert. Scared, but alert. I immediately made a bee-line for my office.

After sending the above E-mail to Lee Ann, and a similar one to someone else in the office to let them know what was happening, I turned my attention to the phone. It was a bit tricky dialing the phone with only one good eye, but I was able to first call Lee Ann and then reach my neuro-oncologist.

As luck would have it, I had one tablet of anti-seizure medication in my backpack, having forgotten to remove it following our vacation. He advised me to take it immediately and then wait a bit to see what happened. He said that a trip to the emergency room was probably not necessary as long as I was otherwise unscathed as the net result of that would probably just be laying around for several hours, being told to up my dose of anti-seizure meds and sent home with another nice bill for Anthem.

Over the course of the next hour or so, the symptoms began to fade although it was very difficult to focus, read or type.

While receiving a ride home, I had a sudden onset of the symptoms again, this time accompanied by strong feelings of déjà vu as I watched cars pass us and drive through intersections. Too bad I could not see the winning lottery numbers for Wednesday’s Power Ball drawing. Lee Ann met me at home and we went to Dale’s first JV football game. Under the bright sun with the symptoms fading fast, I found it almost impossible to follow the action on the field. It seemed to take forever to spot our son and as soon as I would lock in on him, a play would start and I couldn’t follow anything.

A call to the neurologist on call at the hospital did not help to ease any anxiety as his advice was, “You can come in if you’re worried.” I decided that the third episode would be the charm if a trip to the ER was in order. Thankfully, the symptoms faded and the only lingering effect was a nice throbbing headache on the right side of my brain that lit up every time I coughed, sneezed or did anything that sent blood rushing to the right side of my brain.

For the sake of brevity (sort of), I’ll fast forward through the next couple of weeks…
  • August 28: MRI at IU followed by an appointment with Dr. Edward Dropcho, neuro-oncologist; enough concern about change from prior to MRI to order PET scan; he mentions something about the colon cancer chemotherapy treatment Avastin showing promise with brain tumors although not FDA-approved for such use.
  • September 3: PET scan at Wishard Hospital and then hop on an airplane to get down to Atlanta to be there for the start of the SPJ convention on September 4.
  • September 4 – 7: Waiting, waiting, waiting for results…The SPJ convention keeps my mind on other things most of the time. With a deliberate positive outlook, I place the winning bid on a week-long vacation scheduled for next July 4-11.
  • September 7: Another “episode” affecting my left eye, symptoms pass, but brain-ache returns as before.
  • September 8 - 10: Still waiting on results from PET scan with anxiety rising.What should have taken only 24 hours ended up taking several days because Wishard Hospital, a separate entity from IU Hospital, failed to communicate some important information. Apparently, the PET scan printer was down, the IT guy was on vacation and no one bothered to let my doctor know…
  • September 10:FINALLY…I hear from my Indy doctor. Unfortunately, the results are inconclusive. As I understand it, PET scans are very effective if there is definite cancer activity (super hot) or no cancer activity (super cold). Never one to make things easy for anyone, least of all myself, I fell somewhere in the middle. My brain had changed, but the reasons why were not clear. And so off went the scans to my neurosurgeon, Scott Shapiro, and to Howard Fine at the NIH.
  • Later that evening: Lee Ann and I take Dale and Jace to their first concert: Journey, Heart and Cheap Trick at Verizon Wireless Amphitheater. Due to the haze caused by pot-crazed concert-goers, we hope no random drug testing is announced at school the following day.
  • September 11 – 16: Even more waiting, this time for a call from the NIH. Several calls from my direction result in conflicting stories about who has what and when I should expect a return call. Anxiety still on the rise. I’d rather have devastating news over no news.
  • September 16: my local doctor’s recommendation is to order further scans, including spectroscropy, and consider a biopsy or surgery although readily stating invasive techniques in the absence of something definitive on which to operate is less than ideal.
  • September 17 at approximately 5 p.m.: “Please hold for Dr. Fine…” Having been told to expect a call from his nurse practitioner, I immediately girded my loins. He talked fast. I tried to scribble notes that I could decipher later. He didn’t beat around the bush. “This looks like tumor progression…Not massive, but enough to give us concern…Too much time has passed since radiation ended for this to be radiation necrosis…The Temodar is no longer working and we need to do something else… Don’t recommend surgery…Too close to your visual pathways…Permanent loss of vision possible… Clinical trial utilizing Avastin and some other novel agent code named MLN518…Life threatening side effects always possible…You need to consider all of your options and make the best decision for you…Consent forms will be sent so you can read up before your next visit…Whatever you decide, we will always be involved in your care…We’ll see you next Friday…“-click-”
Now my brain was really hurting…As I looked down at my piece of paper, I realized that had stopped taking notes after the first few sentences so I began furiously trying to remember the chronology of the conversation and commit it to writing.

Lee Ann was out of cell phone range so I had a few minutes to put things in order and visit the NIH Web site to get the most basic details of the clinical trial Fine had mentioned before she picked up my message and called back. A good friend of mine happened to ring me up in the interim which allowed to say everything out loud once before the other line lit up and knew it was my wife calling.

Lee Ann already had other plans that evening, but decided to blow it off and we took the kids out to dinner and explained everything we knew up to that point.

A (not so) good night’s sleep did help a bit and I was able to speak with Fine’s nurse practitioner for a good half hour on Thursday and get a better understanding of the clinical trial and discuss the schedule for my upcoming visit on September 25 and 26.

Since this single post has already grown to the length of a freshman composition theme, I will leave you with my my current considerations, in no particular order...
  • Start Avastin here, now (and hope insurance will cover it)
  • Surgery first (if that even makes sense), followed by Avastin
  • Try to get in Fine's clinical trial using Avastin and MLN518 (have yet to know the risks)
  • Look elsewhere (Duke, MD Anderson, UCSF, etc.)
  • Chanting monks to scare away the tumor
That’s right. I said it. Chanting monks. Google it!

"Be still, sad heart, and cease repining;
Behind the clouds is the sun still shining;
Thy fate is the common fate of all,
Into each life some rain must fall..."
-from The Rainy Day by Henry Wadsworth Longfellow