Meet the Rest of My Medical Team

Please meet Dr. Edward Dropcho, my neuro-oncologist at Indiana University Hospital. When he is not treating me, Dr. Dropcho is Chief, Neurology Service at the Richard L. Roudebush Veterans Affairs Medical Center. He also is a professor in department of neurology a the IU School of Medicine. Dr. Dropcho also is co-director of neurology clinical team which includes Scott Shapiro, my neurosurgeon.

Where my brain is concerned, Dr. Dropcho is my primary doctor. He analyzes the scans and prescribes the treatments. Drs. Dropcho and Fine have not always agreed on what they see on the scans which has made things interesting at times, but I think that's one of the reasons getting second opinions is so very important. When it comes to reviewing scans with the human eye, it really does become more art than science. I was told very early on that if the exact same tissue sample was placed in front of 100 pathologists, 30 percent would interpret the sample differntly than the other 70. Amazing.

Saving the best for last...This young man is Dr. David M. Harsha, director of the Family Medicine Residency Program, and director of Sports Medicine, at St. Vincent's Joshua Max Simon Primary Care Center. Okay, so he's three years older than me, but look at that boyish grin!

Dave and I met by chance in the very early 1990s when he was finishing his family practice residency at Indiana University. I actually belonged to a gym that I went to on a semi-regular basis. Dave was there with one of his friends and was wearing a pair of Oklahoma State University shorts. A proud alumnus of the "Princeton of the Plains" myself, I went over and introduced myself. Talking about OSU, we learned we were on campus at the same time during his final and my first year, respectively, living only a block away from each other. Since he did not want to become a veterinarian, he attended medical school at the University of Oklahoma and then moved east to Indiana.

A year of so after we met, I found myself in need of the services of a physician. I already had a doctor in Indy, but when I called to make an appointment, I was asked if I was wanting to see the doctor because I was "sick" or "well." Sick, of course, why would I see a doctor if I was healthy? Turns out my doctor had recently had a kidney transplant and could not see sick patients due to a risk of infection. Bummer.

Uncharacteristically, I not only remembered Dr. Harsha's name, but also where he was practicing on the IU campus. When I first made the call, I was told that Dr. Harsha was not accepting any new patients at that time. I repsponded by saying, "We went to college together." "Hold, please...Dr. Harsha can see you this afternoon." And that was that. David has made a couple of moves around Indianapolis in the intervening years before his current assignment at St. Vincent and I have loyally followed every step of the way. To remind him of his Oklahoma ties (he's really a Michigan native), over the years I have brought him Eskimo Joe's t-shirts from Stillwater's Jumpin' Little Juke Joint.

Dave was kind enough to meet with Lee Ann and me over coffee on Tuesday, Sept. 30, to listen to us about the many options we were considering for this second round against the tumor. It was a very reassuring experience to have an objective set of ears listen to what we are dealing with and offer his counsel and advice.

For my money, David Harsha represents everything a physician should aspire to be. He is the gold standard by which I have measured all of the other health care providers who have been involved in my case since June 24, 2007. Thanks for always being there for me when I needed you, Dr. Harsha. You, sir, are aces!

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 phlembotimized...one 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!

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.

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

Fine, Fine, Fine, Fine...

I made my latest trek to the National Institutes of Health last week - July 29 and 30 - for another MRI and a visit to the neuro-oncology clinic. This visit came at an interval of about six weeks rather than the usual two months because of an unusual spot that showed up on the previous scan. Without keeping you in suspense, I'm happy to report that all is well in the ole brain bucket.

When I met with Dr. Howard Fine, he brought up my last four MRIs side by each on four fancy-schmancy Kodak digital imaging monitors. Every time he tapped the screen, the image moved deeper into my grey matter. With every tap, he kept saying, "Fine. Fine. Fine. Fine..." I told him that I thought his colleagues in the room were going to think he was just chanting his name over and over. The spot - or "streak" as Dr. Fine called it - that showed up on the last scan was not present on the current scan although it had appeared on the first one.

Since brain tumors don't just come and go, he ruled out anything bad. Although he did not have a definitive explanation, he said that it might be that the contrast dye injections occurring during each MRI could be off by a few miliseconds from one scan to the next.

I came down with my first cold in over a year just before my NIH visit so I had to wear a mask the entire time I was in the clinic. I felt pretty goofy, but I guess that's better than exposing another patient whose immune system is seriously compromised to my cooties.

Dr. Fine's nurse practitioner expressed a bit of concern that my cold came right on the heels of my 10th round of chemotherapy when my white blood count was probably at its nadir. I hadn't even given it a thought, but I guess little infections can turn into big problems if your body isn't up for the fight.

Of course, I overreacted. As soon as I got home, I was at the hospital getting my blood drawn and then I went and camped out at my local doctor's clinic. After waiting more than two hours, he realized I wasn't going to leave so he saw me. My white count turned out to be fine so he prescribed some antibiotics and sent me on my way, probably with a generous amount of eye-rolling. Possessing the strength of 10 men - maybe eight and a third now - I should have known I could not be felled by something as simple as the common cold.

If you're curious about the clinical trial in which I am enrolled at the NIH, you can read about it here. It's called a "natural history" study which, as it was explained to me, is kind of a catch-all for people like me who are on the good end of the survival curve.

I also agreed to participate in another study where they took some blood and a slice of my tumor to check for the "expression" of O⁶-methylguanine-DNA methyltransferase (MGMT), a gene that actually works against the particular chemotherapy I am taking: temozolomide. Whatever it is, I ain't got it so that's nice.

It's a Bourbon!

Accompanied by my two sons, I finally made the trek to the Maker's Mark distillery in Loretto, Ky., on Monday, June 23. I have been a Maker's Mark Ambassador for several years now and was among the first to have my name engraved on a barrel some six years ago. My barrel, along with 149 others, finally matured and were ready to come home. Each Ambassador in this inaugural batch was given the opportunity to purchase two bottles during the months of April through June. My time was running out and I'd be damned if some toothless hillbilly was going to get his grubby paws on what was rightfully mine.

Here I be at the start of the distillery tour. Maker's Mark makes a big fuss over Ambassadors with all sorts of fanfare. There were four of us on the tour. Of the four of us, there was one other dude like me who was there to pick up his babies.














The tour would not be complete without a visit to the tasting room. You get to sample Maker's Mark in two forms...in its infancy which is referred to as "White Dog." It smells and tastes like corn. Yuck.

The second snifter has a taste of the good stuff. Good for what ails ya.











The proud father...the only thing missing now are the wax bonnets.










After expertly dipping my bottles in the molten hot wax, I carefully applied the finishing touch: a date stamp on the top of the bottle. Only Ambassadors are allowed this sacred privilege.















The Harper lads, Dale (left) and Jace, pose proudly at the entrance to the Maker's Mark Visitors Center. The boys gladly endured the six-hour round trip drive to share this special moment with their pop.

Thumping Down Memory Lane

Fifty-two Sundays ago today, my brain exploded.

It was a sunny and pleasant day, a little past noon. Lee Ann and the boys were downstairs going about their business. I was upstairs in the spare room, systemically mowing down Nazis on the GameCube playing Medal of Honor (the original, and, in my opinion, the best of the Medal of Honor games). I was in the midst of Mission 4, "A Bridge Too Far," and was near the end of the second level, "Yard By Yard," when it hit me. I had just taken out the last tank and was engaged in a heavy firefight with a couple of Hitler's henchmen who were blocking my path.

Suddenly, the image on the screen appeared through my left eye no matter where I looked. To make things even more weird, the image was encased in what I can only describe as spinning disco lights...red, blue, yellow, green.

I had no idea what was happening, but I knew it wasn't good. As the aura intensified I yelled to Lee Ann who came bounding up the steps in a flash. As I lay on the floor, she called 911. The last thing I can recall is saying that maybe I was having a stroke and hearing her talking on the phone to the 911 operator.

When I awoke, I was in a hospital bed in the emergency room at Indiana University Hospital in downtown Indianapolis. Lee Ann was there, but I don't recall there being any medical personnel around at the time. Lee Ann was there and I remember talking with her for a little bit, but I don't remember what we talked about. I do remember that the first thing I asked her was, "Have you been weeping?" when she first came over to the bed.

I don't think much time passed when the aura started again, signaling the start of another seizure. I saw the same spinning disco lights and told Lee Ann it was happening again. She called out to the ER folks and I remember several people crowding around the bed and in my face before the lights went out again.

The next several hours are a blur. I have vague recollections of being carted around the hospital for various tests - CAT scan, MRI, EEG and some vision test that required me to stick my head in a device that reminded me of a planetarium. I was supposed to push a button every time a tiny light flashed inside the orb, but I kept falling asleep. I was exhausted. The woman administering the test could see it was futile and so suggested that I might have better luck the following day.

I would learn the next day, Monday, June 25, that I had a small tumor - about 10 mm by 25 mm - around my occipital and parietal lobes on the right side. I wish I had a screen shot of the tumor I could post, but, alas, I was not forward-thinking enough to ask for one at the time.

And now to the present...I made my most recent visit to the NIH on Thursday and Friday, June 12 and 13. I was told there was no change since my visit in April - which is good - and was sent on my way. I saw my neuro-oncologist in Indianapolis a few days later and his reading of the MRI was a bit different. He noted a small, triangular area that "lit up" when the contrast dye was injected. Could be nothing. Hard to tell. He suggested that I could wait until my next regularly scheduled appointment in August or perhaps go back to the NIH in a month for another scan on the same equipment. We left things with him going to contact my doctor at the NIH and decide what to do.

In the meantime, I am finishing up my ninth cycle of chemotherapy on Monday, June 23, and am finally making that trip to Loretto, Ky. and the Maker's Mark distillery.

Epilogue: I returned to the GameCube this evening, one year to the day after I last picked up the game controller, popped in Medal of Honor and finished off those Nazi bastards.