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

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

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.

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!

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.

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!

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).

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.

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.

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