Saturday, December 20, 2008

Paging Marlon Brando's Stunt Double!

"The horror! The horror!"

Fat and bald once again am I. Luckily for me, a local improv company has announced it is developing "Col. Kurtz: The Musical," a laugh-a-minute production based on Joseph Conrad's novella Heart of Darkness. I think I have real shot at the lead.

And I have been going through a bit of a creative dry spell which explains the lengthy drought since my last posting in mid-November (not counting the anniversary tribute to Ma and Pa Harper).

The new chemotherapy treatment I started on November 12 had my hair starting to fall out by Thanksgiving. I first noticed it in the shower when I was stunned to see one of my paws covered in hair while I was shampooing. After two more weeks of shedding, I decided to go ahead and shave my pate rather than continue to pull it out in clumps and risk a drain clog.

The first two Camptosar/Avastin treatments proceeded without incident until the third day following when I was completely knocked on my arse by fatigue. It was particularly frustrating at Thanksgiving because I had to miss an entire day of the long-anticipated Harper family reunion. My oldest brother, Tim, is finally home from his Army assignment in Germany and it marked the first time EVER that our entire branch of the Harper family tree was together.

Sitting: Ed (the patriarch), Dale, Jace, Hayden, Hallie, Dionne, Dave and Tim Standing: Terry, Lee Ann, Meghan, Kaitlin, Joan (the matriarch) and Nicole

Quickly...Ed and Joan made Tim, Dave and Terry. Tim made Meghan and Kaitlin and is married to Nicole (that's Dr. Nicole now, by the way). Dave and Dionne made Hallie and Hayden. Terry and Lee Ann made Dale and Jace.

And I would be remiss if I did not acknowledge and thank my Uncle Mike and Aunt Marian Harper who host the great Thanksgiving feast each year at their home in Dayton. This year's headcount totaled nearly 50. For some mysterious reason, only Jace Harper is absent from the photo below...It truly is one of the highlights of our year. The feast, that is, not Jace missing from the picture.


As for me, my next chemotherapy session takes place on Tuesday, Dec. 23. My doctor has been tinkering with some of the other medications I am taking which had the pleasant result of sparing me from any debilitating fatigue after Round 3. With Jesus' birthday this week, I am hopeful for the same result this time as we are planning to spend time with Lee Ann's family in the days following Christmas.

Getting back to being fat and exhibiting some nice elephant man like features, my doctor is finally, FINALLY, tapering me off the steroids. By early January, I should be off them completely and am looking forward to the strength in my legs returning and my giant gut to start melting away. I actually have not gained that much weight since the second surgery, it is just that I have lost some pretty significant muscle mass which has turned to chub and been redistributed elsewhere. The disfiguring lump/humps that have developed in my neck-u-lar region should start to dissipate, too, but I am told that could take weeks or even months to get back to "normal."

As for the new treatment itself, it's too soon to know if it is working although my most recent MRI, taken on Dec. 9, was much-improved from the post-op, pre-chemotherapy MRI. So as long as things keep heading in that direction, maybe we're on the right track.

A number of you have inquired as to my prognosis. The only answer I have - which is what my doctor told me - is "I don't know." Since every patient and every tumor is different, I am told that all the medical community has to go on is averages. All of those indicators that were in my favor to start are still there...relatively young, otherwise good health, no neurological deficits...all good. Tumor recurring in less than a year...bad.

I continue to try to maintain a positive outlook and not dwell on the negative stuff. Some times are more difficult than others, but what else can a boy do?

As REO Speedwagon admonished us: Live Every Moment, Love Every Day.

Or maybe it was Kid Rock who said: Bawitdaba da bang a dang diggy diggy diggy said the boogy said up jump the boogy.

Either way, words to live by...

xoxox

Friday, December 19, 2008

Happy Anniversary, Mom and Dad!

Ed and Joan Harper on their wedding day - Dec. 19, 1959 - in Columbus, Ohio

Hats off to Ma and Pa Harper on the occasion of their 49th wedding anniversary! Although separated by great distance, my brothers and I treated our parents to a lavish dinner last night at one of Oklahoma City's finest eateries. All the red meat they could handle! Thanks for modeling the way for nearly half a century!

xoxox

Wednesday, November 19, 2008

Avastin Ye Swabby!














Lounging at the infusion center at the new Melvin and Bren Simon Cancer Center at the Indiana University Hospital in downtown Indianap0lis.

I was delighted to learn - less than 24 hours before I was scheduled for my first infusion of irinotecan and Avastin - that my insurance carrier gave its approval to pay for the "off label" treatment. Talk about taking a proverbial load off of our minds. Since these drugs are not yet FDA-approved for the treatment of brain tumors, we would have been faced with paying about $10,000 per infusion had the insurance company not come through. Now let's just hope the stuff works!

Irinotecan is used primarily to treat colon cancer while Avastin is FDA-approved to treat colorectal, lung and breast cancer. Clinical trials involving the use of Avastin alone or in combination with irinotecan have produced favorable results for patients like me with recurrent, malignant gliomas. Earlier this monthly, Genentech, the maker of Avastin, asked the FDA for approval to use the drug as a secondary treatment for glioblastoma, the most aggressive of brain tumors (what I have).

The first treatment occurred on Tuesday, November 11 and took about three hours. I will go back every two weeks for the foreseeable future. A monthly MRI is part of the regimen, as well.

Wednesday, November 12, 2008

See, Honey, There's Always Someone Who Has It Worse Than You

Team Terry at the Oklahoma Brain Tumor Foundation's Race for Hope
Standing: Phil Stegal, Terry Harper, Dave Harper, Shelley Spearman, Paula Henry, Roger Lower
Kneeling: Dierdre McCool, Greg McCool, Tammy Hott
Behind and/or Hiding from the Camera: Ed and Joan Harper, Allison Dill

There was a nip in the Oklahoma City air on the morning of Saturday, November 8 as 363 runners and walkers gathered at Lake Overholser for the start of the Oklahoma Brain Tumor Foundation's 5th annual Race for Hope to raise dough for brain tumor research. When I was in high school, we called it Lake Hold-Her-Closer, but that's a story for another time.

Unlike the 5K event that I participated in here in Indianapolis in May, the OKC event was for serious and casual runners alike. One of my high school classmates, Shelley Spearman, organized our group and another of our classmates, Chris Johnson, President and CEO of USA Screen Printing, provided us with custom T-shirts. Shelley was the serious runner in our group and tackled the 12K race while the rest of us walked the 5K course.

While we were out on the course, we passed a couple of women that appeared to be a mother and daughter although I cannot be sure about that. The older of the two inquired about our matching T-shirts and I explained what we were up to. She asked me what kind of brain tumor I was sporting and I told her. I guess she thought having a brain tumor also made me deaf because she turned to her friend/daughter and said, "See, Honey, there's always someone who has it worse than you." I briefly considered making a witty retort to put her in her place, but my better judgment prevailed.

We finished the 5K walk in the not-even-close to record time of just over 57 minutes. Shelley completed the 12K run less than 10 minutes later. She would have finished even sooner, but we held her up at the start taking pictures.

A good time was had by all and the event raised nearly $8,000 for brain tumor research! Thanks, Shelley, for making it happen!

Saturday, November 1, 2008

Stitch Removal Day!

Graphic Content Warning...it's just a little blood, but please beware.

Wednesday, October 29 was stitch removal day! It was a very busy day in the Regenstrief Health Center at Wishard Hospital where Dr. Shapiro's office/clinic is located. The lobby registration/waiting area was teeming with patients. And each visit is like the first. They don't seem to maintain your information so you have to go through the same registration process each time. Even though Dr. Shapiro is the only doctor I have ever seen there, my registration form always lists the doctor's name as "Dr. Walkin." Go figure. We were finally cleared to proceed to Dr. Shapiro's clinic the sixth floor after about 45 minutes of sitting around. Once there, it was only a matter of minutes before we were back in the examination room and the stitches were coming out.

video

Yesterday - Halloween - was my last day on steroids and I cannot wait until I return to "normal." Although I did not blow up to Jerry Lewis proportions, the disgusting camel-like hump on the back of my neck and around my chin is clearly visible in the video. And I just seems to feel generally lethargic. My legs feel like they each weigh a thousand pounds. I am anxiously awaiting those side effects to disappear.

So what next? My neuro-oncologist has scheduled the next round of chemotherapy to start on Tuesday, November 11. This will be the combination of Avastin and irinotecan. As it has been explained to me, the whole procedure takes about 90 minutes and is administered intravenously. I have been told that most people tolerate the Avastin pretty well, but there is a chance of some of the more unpleasant side effects with the irinotecan. We'll just have to give a whirl and see what happens!

We still awaiting word from my insurance carrier, Anthem, as to whether they will cover the treatment since Avastin is not FDA-approved for treating brain tumors. Although Anthem has paid for the treatments for others in the past, it does not mean my treatments will be approved. And so we wait.

At $10,000 per treatment, administered every two to three weeks, the hospital is being a bit of stickler that they are going to get paid before hooking me up. Isn't that nice? My doctor has offered no alternative treatment at this point so we're keeping our fingers crossed.

If coverage is denied, we'll need to get a shitload of bake sales in the works, I suppose.

And there you have it!

Sunday, October 19, 2008

Terry's Brain Salad Surgery: The Ultimate, Multimedia, Extravaganza, Director's Thump

Avenue Q at Clowes Memorial Hall

7:30 p.m., Wednesday, October 15, 2008, Clowes Memorial Hall

The best possible distraction to take our minds off a day's worth of brain surgery seemed like an evening of puppet sex watching the Broadway Musical AVENUE Q.

From the official Web site: AVENUE Q is the story of Princeton, a bright-eyed college grad who comes to New York City with big dreams and a tiny bank account. He soon discovers that the only neighborhood in his price range is Avenue Q; still, the neighbors seem nice. There's Brian the out-of-work comedian and his therapist fianceé Christmas Eve; Nicky the good-hearted slacker and his roommate Rod -- a Republican investment banker who seems to have some sort of secret; an Internet addict called Trekkie Monster; and a very cute kindergarten teaching assistant named Kate. And would you believe the building's superintendent is Gary Coleman?!? (Yes, that Gary Coleman.) Together, Princeton and his new-found friends struggle to find jobs, dates, and their ever-elusive purpose in life.

With song titles like "Everyone's a Little Bit Racist," "The Internet is for Porn," "I'm Not Wearing Underwear," and "Schadenfreude," what's not to love?

The last line of the musical: Everything in life is only for now.

Heading to the Hospital

8 a.m., Thursday, October 16, 2008
Surgery has been rescheduled from 11:30 a.m. until 1:30 p.m. so I decide to take the Trooper to the only Isuzu dealer left in town to install a new tire rim. For the first time in weeks, I actually oversleep, but I still make it to the appointment, albeit a few minutes late. I make a quick run to the dry cleaners and then head home to await the appointed hour when we need to head to the hospital. Check-in time is at 11:30 a.m., two hours before the scheduled surgery. While waiting to leave, I receive a call from my dad that my grandmother - my mom's mom - has died at the age of 98.

11:35 a.m.
We arrive at the hospital a few minutes late, but the intake process goes smoothly and I am sent downstairs to the pre-op waiting area to get ready.

11:55 a.m.
My number is called and I am sent back to Room 24 to prepare for surgery. The first order of business is to disrobe and put on the hospital issued robes - two of them. My vital signs are taken, I am asked lots of questions and there are three nurses around to make sure I am properly prepared. When we bring out the camera to start documenting the experience, one of the nurses becomes rather uncomfortable and feels the need to say, "Oh, more pictures," every time the camera is raised. I tried to assuage her concerns that I am writing a book or trying to "out her" from the witness protection program to no avail. We decide just to ignore her idiosyncrasies and go about our business because the next logical step would be a punch in the face. She must have really been flustered by the camera because she used the wrong vial to draw some blood and it had to be done over.

Our next visitor was Dr. Robert S. Byers, the lead anesthesiologist on my surgery. A former football player, Dr. Byers has a terrific bedside manner and goes over all the potential risks and complications that can occur when one is put under general anesthesia. He also talks to the Harper lads about the importance of getting involved in sports and teamwork, and really puts them at ease. After all of our questions are answered, Dr. Byers leaves to prepare for my surgery.

One of the doctors marked my head with a "yes" to indicate where the incision should be made. As you'll see below, they pretty much cut along the last year's incision.

Our final visitor is one of Dr. Shapiro's young fellows/residents, a Dr. Voorhies, I think, who comes in to go over the procedure with us one more time. He marks on the back of my head with a Sharpie to ensure that the cutting happens in the correct place.

I am stripped of my final vestiges...my LiveStrong bracelet, my wedding ring and my St. Peregrine Medallion.

Almost time to head back to the O.R. Time for one last kiss.

1:45 p.m.
The time has come. Last year, an emergency cropped up and I had to wait more than fours hours past my scheduled surgery time, but not this year. I bid goodbye to Lee Ann, Dale and Jace and walk back to the operating room. It seems smaller than last year, but was probably the same size. There is a lot of activity in the room...all folks on the anesthesiology team. They have me lay on a table that resembles what Mel Gibson was laid on before he was eviscerated at the end of Braveheart. I did cry out "Freedom!" but only loudly enough to evoke some laughter from the doctors and nurses that were moving about preparing to send me into a deep sleep. Only a few moments later, I was being stuck and pricked with various needles. There was another anesthesiologist working on me, but I do remember Dr. Byers coming into the room and speaking to me briefly. An oxygen mask was placed over my mouth and nose. I was instructed to take a few deep breaths and that's all I remember until I woke in the recovery room about four hours later.

1:45 - 5:30 p.m.
Lee Ann, Dale, and Jace move to the surgery waiting area to sit with friends: Gale Wilkerson, Jill and Rich Rezek, and Jan Lindeman sit with us and Lee Ann's sister Heather Kish. Two of Terry's colleagues, Joe Skeel and Chris Vachon, stop by, as does Lee Ann's friend Wendy Brewer.

Dale and Jace have lunch with Gale and play UNO with Heather; Lee Ann visits with everyone to detail what happened in the pre-op area (where only family had been); some read books and snack. There is a good deal of conversation, most of it an effort to keep from thinking about what's going on nearby.


Jace has carved out his little spot in the waiting area.

4:00 p.m.
A surgical nurse informs us that Terry's preparation for surgery lasted until 2:57 pm. So surgery has only been going for an hour.

At 5:10 several visitors leave and Terry's parents call for an update. We all expected it to be over by now. Lee Ann shares the update from the surgical nurse and informs them it may be as long as another hour.

5:40 p.m.
Lee Ann visits with Dr. Shapiro (surgeon) who informs her that the surgery went just as planned with no complications. He says he placed four Gliadel (chemotherapy) wafers on/in the cavity left by removing the tumor. They removed everything they could see with the eye and using the MRI. He says that Terry is awake, alert, talking, and adding (the question was what is 4 plus 5). No one will be able to see him for at least 90 minutes, when he is settled into the Neuro-Intensive Care Unit.

The boys eat dinner while the rest of us make phone calls to update family and friends. I make calls to all on Terry's list (save our good friend Ron Richard--damn--who gets a phone call from the man himself when Lee Ann's gaff is discovered later that evening).

7:10 p.m.
Lee Ann, Dale, Jace, Heather, and Gale are in the elevator heading to see Terry in Neuro-ICU (Lee Ann is never on time but there is a first time for everything).


video
How in the hell do we get into the Neuro-ICU?

7:15 p.m.
We finally get to our destination! Who knew that the trek up three floors could take so damn long?!

In the Neuro-ICU, Room 9.

A post-operative smooch!

Terry and fellow Oklahoma State Cowboy Gale Wilkerson.

It's hugs and kisses for everyone. Dale and Jace are visibly relieved to see their dad smiling and talking. The ICU nurse scowls at the large number of guests but works around us. We try hard to stay out of her way and not step on the cables that snake across the floor. There are IVs and bandages adorning Terry (oxygen tube to the nose for good measure); monitors flank his bed.

8:00 p.m.
All but Lee Ann have left for the night. Heather takes the boys home to relax--Terry feels they have paid their dues at the hospital for the day.

8:00 p.m. - midnight
The nurse comes in for a regular rotation of pain medications (IV and pills), questions to test neurological function, monitor checks, and respiratory tests. Barely 30 minutes goes by without a visit from some medical staff. Between medical meddlings, Terry calls his parents to assure them he is feeling good.

12:30 a.m.
Lee Ann kisses Terry goodbye for the night and heads home for a few hours of sleep.

3:00 a.m.
CT scan (because, really, what else are you going to do at 3 in the morning?)

Terry calls a few members of his posse he knows are awake at this hour.

7:30 a.m.
Dr. Shapiro visits his favorite patient; within the hour his entourage of students/fellows follow. Breakfast arrives: grits, hash browns, sausages, eggs, yogurt, juice...everything a growing boy needs!

9:15 a.m.
Lee Ann arrives.

10:15 a.m.
Terry dons his Superman outfit after being untethered (IVs, catheter, blood pressure cuff). Lee Ann brings a skinny vanilla latte for Terry!


Friday morning. Finally! I am untethered and can move about freely!

11:15 a.m.
Terry and Lee Ann walk around the hospital lobby; showing off, Terry walks outside briefly in the new Simon Cancer Pavilion's Healing Garden.

A visit from two of my colleagues: Joe Skeel and Chris Vachon.

Heather Kish, Lee Ann's sister, made the trip from Lebanon, Ohio for the main event.

The Harper Family is Living Strong...ready to kick ass and take names.

3:30 p.m.
Dale, Heather, and Jace leave; Heather heads home to her family in Ohio and Dale reports to Arsenal Tech High School for the season-ending game against Broad Ripple (a bitter defeat).

Powerful local attorney and friend John Mead stops by to see if a malpractice suit is in order. Thankfully, it is not.

5:30 p.m.
Lee Ann leaves to grab a bite of dinner and report to the Tech Titans football game. Terry is kept apprised of their progress via cell phone.

Saturday, 7:30 a.m.
Lee Ann arrives to video the doctors who will remove the head bandage.

video
The Moment of Truth!

A lovely scar...and NO STAPLES!

10:30 a.m.
Terry and Lee Ann drive away from Indiana University Hospital, 47 hours after arriving.

Friday, October 17, 2008

A Quick Update

Greetings! I just wanted to let everyone know that the surgery went very well and Dr. Shapiro is confident that he got all of the recurrent tumor there was to get. At least all that the eye and the stealth MRI could see.

The entire procedure, from the time I walked back to the operating room until they wheeled me into recovery lasted about four hours although the surgery itself lasted about two hours.

Following last July's surgery, I felt like a Zombie for about a day, but not this time. I feel just great. After being untethered from IVs, catheters, etc. this morning, I have been strolling around the hospital looking for something to do. I was calling friends this morning at 4 a.m., sending texts and E-mails. Thanks for answering the phone, my friends!

The only discomfort this time around has been in the area where they cut me open, but the pain medication I am provided is superb. First, it's a direct injection of fentanyl that takes the edge off immediately. Percocet follows which kicks in about 20 minutes later and I am flying.

I requested - and received - sutures this time around so I have to wear a goofy headdress until tomorrow morning. Initially, I had an outer covering that fastened under my chin that only increased the goofiness factor, but that came off earlier today.

While staples may be quicker and more convenient for those doing the operating, having them removed was the most painful part of the whole ordeal last year. It was the only time my eyes watered. Bone, skin, staples and a pair of pliers are not for me.

I have spent very little time in bed because I just feel like I need to be moving around. Lee Ann has been with me most of the day and the boys came by for a visit this afternoon, along with Lee Ann's sister, Heather, who came over from Lebanon, Ohio. Two of my co-workers, Joe Skeel and Chris Vachon, also stopped by for a visit this afternoon.

Dr. Shapiro tells me I can go home in the morning so I am looking forward to that with great relish.

Dale, who plays football for Arsenal Tech High School, has his final regular game this evening. It's homecoming against Broad Ripple and if Tech wins, they will share the IPSAC conference title with Brad Ripple and Arlington High School. I am told that Tech has not won a conference title in decades so this is big stuff in our household. Lee Ann and Jace will be there to cheer the team on. I will be eagerly awaiting text updates!

My friend, John Mead, just arrived for a visit so I will "talk" to you again soon!

xoxox

Thursday, October 16, 2008

A Tribute

I received a call this morning that my maternal grandmother, Louella Mautz Welling Harmon, has died at age of 98. My grandmother had been living in Florida since the mid-1970s following the death of my grandfather, Dale L. Welling.

Born on April 29, 1910, my grandmother lived a very full life and was an avid golfer and bowler in her prime. In recent years, her body began to give out even though she was vigorous of mind. A little more than a week ago, she took a fall that resulted in a broken femur. At her age, surgery was not a viable option which meant she would be bedridden for the rest of her days. Not how she wanted to live. She passed quietly this morning.

She is survived by two daughters, my mom, Joan, and my aunt, Pat, as well as me and my brothers, Tim and Dave, and Pat's daughter, Debbie.

Vaya con Dios, Grandma. We love you and will miss you.

Tuesday, October 14, 2008

My Piggies Are Ready!

Lee Ann got my piggies ready for the big day with a pedicure and two coats of Colts blue polish. We even added a drop of Holy Water from Lourdes to each soaking tub for good luck, plus an extra drop on the back of my pate for good measure.

And by soaking tubs, I mean GladWare®.

I hope the surgical team will be able to stay focused on my brain rather than my beautiful feet and toes.

T minus 36 hours and counting...

Sunday, October 12, 2008

Thumping My Melon Goes National!

One of the great things about working for the Society of Professional Journalists and the Sigma Delta Chi Foundation is getting to meet and know journalists from all over the country.

During my tenure, I have become friends with Joe Hight, director of information and development, at The Oklahoman. In addition to working at The Oklahoman, Joe is president of the Dart Center for Journalism and Trauma.

Anyhoo...Joe contacted me last week to let me know that The Oklahoman was in the process of launching a new section on its Web site called KnowIt which currently features online communities and features on addiction; cancer; death, dying and grief; and retirement. He asked me if I would be willing to have my blog linked to the cancer section and I readily agreed. I was contacted by a reporter late last week who wrote a brief story that introduced the blog. I received word on Friday evening that the site was "live."

You can access the online story and link to my blog here.

My Mom, Dad and brothers think it's kind of cool that their baby boy/brother has made the big time in Cowboy Country, where I grew up from 1974 - 1986.

And congratulations to my No. 17-ranked Oklahoma State Cowboys on their crushing upset of the No. 3-ranked Missouri Tigers, 28-23, in Columbia last evening. Boy One Dale and I were glued to the TV for the entire game. I am now awaiting the arrival of the six dollars I won from two humbled Tiger supporters.

And today, we will be cheering for the Colts to win their first home game in the new and beautiful Lucas Oil Stadium. Dale and I will be on hand to root the Colts to a victory over the Baltimore Ravens...the new Colts vs. the old Colts!

T minus five days and counting until my skull is once again opened like a sardine can! Let's get 'er done!

Monday, October 6, 2008

Check Out the Big Brain on Terry!


There were more than 3,000 images on the MRI from September 25, 2008, and I'll be damned if I could find one that shows what is going on in my grey matter. I do know, however, that left is right and right is left so any bad stuff would be showing up on the left side of the above image. I'll keep looking and post another image if I can find one that shows anything interesting.

I underwent my pre-operative Stealth MRI today, along with an EKG, with a bit of phlebotomy thrown in for good measure (four tubes worth!). The doctor wants me to have two units of my own blood on hand for the surgery which will require a couple of trips to the blood bank to harvest before next Thursday's scheduled surgery. Fortunately, one of the big blood banks in Indianapolis is only a few blocks from my office so I can stop by during lunch. Whee! Maybe I'll get a cookie and juice, too!

T minus 10 days and counting!

Saturday, October 4, 2008

Doc Talk

Back in mid-September when things were starting to heat up again and my doctors were making their various recommendations on what I should do next, a good friend of mine asked me if had had that "difficult" conversation with them about what my goals for all of this were.

My friend told me that studies have shown that when patients do not make known their desired outcomes to their doctors, that the doctors make up their own stories based on what they know about the patient from previous meetings, notes, etc. I don't think this means anything nefarious, they just draw their own conclusions based on what they know, or think they know.

So that morning, I tapped out the following to both:

"I don't think I have ever had the conversation with either of you about what my desired outcome here is so I wanted to try to convey that to help inform your approach to my course of treatment.

I am 44-years old, married for more than 19 years to a woman I have been with since 1985. We have two teenage sons, a junior in high school and an eighth grader. I have a great job, my employers have been extremely supportive of me through all of this and my affairs are in order. I drink in moderation - primarily wine - although I have been known to howl at the moon on occasion. I am not a smoker although I have smoked. I've even been around a few cigarettes in the past 13 months when I have been out in social situations with friends who do smoke. I don't use illegal drugs of any kind and I try to be conscious of the foods I eat. I try to exercise on occasion, but I don't do it as much as I should.

Quality of life is my most important consideration. If my time is indeed limited, I want to live it to the fullest and die on the beach in Cabo San Lucas at sunset with a shot of tequila in one hand and my wife's hand in the other.

I don't want to bleed out in a hospital bed somewhere. I don't want to take a "live at all costs" approach because I don't want to put myself or my family through any more grief than is absolutely necessary.

I want to spend my time creating memories with my family that they can cherish after I am gone. I want to take them zip-lining in the mountains of Colorado. I want to take them to Big Island in Hawaii to hike the volcanos. I want to eat great food and spend time with my family and friends.

Please don't misunderstand. I do not cherish the thought of shuffling loose the mortal coil. I don't think of my cancer as a "gift" or a "journey" or anything else like that. It just is. I want to live, but I want to live the "rest of my years" like the "best of my years."

I am willing to trade the potential of partial vision loss that may result from surgery if the alternative is dying sooner with a full field of vision.

At this point, I am not willing to be a guinea pig for the good of mankind, but if some good can come from my particular situation that fits in line with my goals, I'm your man.

So I hope I have been able to give you a better picture of what I would like to come from all of this, and given you a better understanding of who I am. Thanks for taking the time to read."

I heard from both doctors within a day thanking me...and telling me to keep the moon howling to a minimum as alcohol reduces the effectiveness of the anti-seizure medication.

A couple of days later at dinner, Lee Ann and I finally had this same conversation with Dale and Jace. It was a pretty emotional discussion, but we ended it with a group hug and kiss into which Jace felt it appropriate to insert his tongue. So we knew it was all good.

Thursday, October 2, 2008

Codename: Shock and Awe

After several days of contemplation and numerous visits with various doctors, Lee Ann and I have decided on our next course of action against what is now my recurrent, malignant glioma. Rather than take a more cautious, conservative approach, we have decided to hit it with everything we can and codename this phase of treatment: “shock and awe.”

On Thursday, October 16, I will once again put my brain in the capable hands of Neurosurgeon Scott Shapiro who will remove as much or all of the tumor that has recurred. From what we can see on the scans, he feels pretty confident that whatever is in there is gettable. Before sewing me up, he will “install” a chemotherapy disc which will dissolve over the following three weeks or so and deliver a low level of chemotherapy directly to the affected area.

I am anticipating that I will be home recuperating for four to six weeks. Although I will let my body dictate my return to normal work routines, I am hoping that the downtime will be closer to four weeks rather than six. I recall being quite restless after only a few days of being home in 2007.

When I have sufficiently healed from surgery and the chemotherapy wafer is dissolved and gone, I will start another chemotherapy regimen here in Indianapolis involving the drug Avastin combined with another chemotherapy agent called irinotecan. These drugs will be administered intravenously every two to three weeks at the IU Cancer Pavilion. The goal of this chemotherapy is to choke off the a tumor’s blood supply, thus robbing it of its ability to grow. Avastin, while not yet FDA-approved to treat brain tumors has produced enough good results in other brain tumor patients that it is the logical next step. Another promising aspect is that Anthem, my health insurance carrier, has paid for this “off label” treatment in the past. No guarantees, of course, but promising.

Each treatment is expected to last about 90 minutes or so. My doctor has told me that both drugs are pretty well-tolerated by most patients with low to moderate side effects. If I can keep my hair, I will be delighted. It gives me my mojo. I got spoiled on the Temodar I was taking for the past year that produced nary a negative side effect.

Of course, there are always potential life threatening consequences associated with any major surgery, especially the brain, but the risks are in the low range and things should go pretty much as they did a little more than a year ago. There are other potential serious consequences involved with the chemotherapy (stroke, hemorrhage, etc.), but when compared with doing nothing and letting the disease run its course, the decision was an easy one for us.

When all of the options were put on the table, it became crystal clear to Lee Ann and me that this was the way to go. I have no reservations and am ready to get going.

The next two weeks will be spent getting things squared away at home and at work to make sure this transition is as smooth and seamless for everybody involved. I have been blessed with two boards of directors who remind me at every opportunity that my health and family are my first priorities and not to worry about work. And then there is the small group of men and women that make up the professional staff of the Society of Professional Journalists and the Sigma Delta Chi Foundation. These people - Chris, Joe, Heather, Linda, Amy P., Amy G., Andrew, Scott, Langela, Lauren, Jake, Billy, Mary and Jamie - are the absolute best. I could not ask for a better group of professionals with whom to be associated, especially when the chips are down.

Wednesday, October 1, 2008

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!

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 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!

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

Sunday, August 3, 2008

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.

Tuesday, July 1, 2008

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.

Sunday, June 22, 2008

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.

Saturday, May 10, 2008

Cabeza para la Curación

Today, I was joined by Lee Ann, Dale and Jace as we participated in Head for the Cure, a 5K run/walk to raise dough for the American Brain Tumor Association. The annual event is organized locally by the children of Ted Sapper, a prominent Indianapolis businessman who succumbed to a brain tumor in 2004. The first Head for the Cure run/walk took place later that year. The event has grown over the years and expects to raise nearly $30,000 for the ABTA this year.

We are pictured above at the conclusion of the walk, high atop the summit in Carmel, Indiana's West Park.

Jace jumped out to an early lead and set the pace for the Harper clan as we made our way through and among the hundreds of runners and walkers who turned out on this crisp and sunny day in May.

As we wound our way through Coxhall Gardens midway through the course, the clock struck 10 a.m. and a carillon began to play. Ironically, the third song was "If I Only Had a Brain," from The Wizard of Oz. The timing could not have been more perfect.

Eventually, all four of us were spread out along the 3.4 mile course, but we managed to regroup near the finish to celebrate together. Sadly, I somehow lost our two raffle tickets along the way so we'll never know if we won any of the door prizes. We conducted a hard target search of our immediate surroundings to no avail. Our spirits were not dampened, however, as there was food and drink aplenty for all of the participants.

And now it's off to a ukulele performance (Jace) followed by a soccer game (Dale). Whee!

This Day in History:
1986: Lee Ann and Terry earn their bachelor's degrees from Oklahoma State University, the "Princeton of the Plains."
2008: Terry's niece, Meghan, graduates from the University of Wyoming, the "Oklahoma State of the Rockies," and already has lined up a PR job with Dish Network in Denver.

Wednesday, April 30, 2008

Birthday Thumping


Forty-four years ago today I sprang forth from the loins of my sainted mother. What a delightful ride it has been for the last two score and four years. And I am happy to report that 10 months after learning of my defective gray - or is it grey - matter, that I received another outstanding report during my last visit to the NIH in mid-April. I was fortunate to have Lee Ann accompany me. Thank you, American taxpayers.

Dr. Howard Fine (pictured here with his favorite patient), chief of the neuro-oncology branch at the National Cancer Institute, lined up my last four MRI scans dating back to last October. Back then, there was quite a crater where the tumor used to be. Now, my brain has filled back in and you can hardly tell that anything was ever askew. The change, as Dr. Fine called it, is "dramatic." So I have that going for me...which is nice.

Dr. Fine's findings, as it were, were corroborated by my local neuro-oncologist, Dr. Edward Dropcho, a few days later. I completed my seventh cycle of chemotherapy on Monday, April 28. As long as my body tolerates the drugs, Dr. Fine wants to keep pounding away for up to two years. Dr. Dropcho is leaning more toward one year. The only study with this particular drug - temozolomide - lasted six months so there is no evidence one way or the other as to the optimal length of treatment. I may stage a steel-cage death match between my two doctors to decide which course to follow.

One side note...my military-style haircut has been a real conversation starter. Lee Ann and I had a nice chat at O'Hare airport with a Navy man who was sure that we had served together on an aircraft carrier in the mid-1980s. We learned from him that the third largest naval base is in Crane, Indiana. We also got to meet the team doctor for the Cincinnati Bengals when he asked what branch of the service I was in because his son is preparing to graduate from West Point. Very cool.

I'm back to Bethesda in mid-June. If anything exciting happens between then and now, I'll let you know!

P.S. A shout out to my grandmother, Lou Harmon, who turned 98 yesterday!

P.P.S. And a shout out to my favorite expat cousin Emily who shares my birthday but is much, much older than I. Emily is pictured below with her youngest daughter, Ellie, at the U-Bahn station in Munich in late March. Look how excited Ellie is to be spending the day with her mother and favorite first cousin once removed!
P.P.P.S. Here I am with friend and fraternity brother Bob Marchesani, newly-minted chairman of the North-American Interfraternity Conference (NIC), on April 13 in Washington, D.C. The NIC is the equivalent of the United Nations for men's fraternities. In his day job, Bob is a high-powered executive with Eli Lilly & Co. and is the person who pointed me in the direction of Dr. Fine in the first place. I am very grateful to Bob.

Thursday, February 14, 2008

The Longer You Go, The Longer You Go

No, the title of this post has nothing to do with a "male enhancement" product. It's something my doctor said to me earlier this month during my bi-monthly brain check-up at the National Institutes of Health National Cancer Center.

But first, the good news...my brain looks "outstanding." In December, there was still a very visible ring around the area where the tumor used to be. That now appears to be collapsing in on itself and getting much smaller. Yes, there is shrinkage. But it's the good kind. The other word I recall the doctor using to describe the difference was "remarkable."

The good doctor then asked how I was doing, how I was feeling, etc. I told him that I tended to get anxious as the routine check-ups approached wondering what the MRI would show. He told me that while that was normal, that the longer one goes without showing any signs of progression, the longer one...goes. Now, granted, it has been only seven months - to the day - since my brain exploded, but this little actuarial factoid was new and welcome information to me.

I have yet to figure out how to block from my mind that I had a high-grade, malignant brain tumor and focus only on the moment. I'm not sure how anyone in similar circumstances can. Hardly a day goes by that someone doesn't ask how I'm feeling; I take drugs every day; and I have only to look in the mirror each morning and see that although my hair is finally starting to fill in, it is still very thin and white in the area that took the most direct hits of radiation. With the scar, it kind of looks like a little crop circle. That I don't dwell on it all day, every day is the important thing methinks.

I am just now finishing up my fifth cycle of chemotherapy (for some reason, I cannot stand the more popular, truncated word, "chemo"). I will take my fifth and final dose of this cycle tomorrow morning and then board an airplane for a 7,899 mile trip to Taipei.

I am traveling with a group of nine other SPJ members as part of a professional and cultural exchange to the island also known as Formosa. Not counting layovers in Detroit and Osaka, we're scheduled to be in the air for just under 19 hours. We'll return to these United States of America on Monday, March 3.

Until next time...

Author's Note: The date on the post reads February 14 because that's when I began drafting it. It was mostly written on Sunday, February 24, 2008.