A Life Well Lived

On Saturday, June 6, we gathered to remember Terry at the country place of friends Sara and John Trittipo. Terry made me promise there would be no traditional funeral, but he had listed things to include. There should be a bagpiper (playing "Amazing Grace"), it should be by water and there should be fire. Terry told me that what he really wanted was a viking funeral, so we adapted the concept to include his ashes on a small water vessel on a pond in this idyllic countryside.

My sister, Heather Kish, worked very hard to coordinate the events that weekend; our friends and family were eager laborers to bring it all together.


More than 150 people joined us, writing their good wishes and funny memories in the guest book. At 8:45 pm, the bagpiper led the way as Terry's brothers, Tim and Dave, carried the little boat that held Terry's ashes, along with reeds and grasses to help it burn. Behind them, I held hands and walked with Dale, Jace, Ed and Joan (Terry's parents); everyone followed us. When we were all gathered at the water's edge, Rev. David McDonald (friend and Phi Psi brother) spoke: he helped us remember Terry's humor, grace, and loyalty while also honoring his life and legacy.


As we listened, my brother-in-law Steve Kish helped Dale and Jace into a metal rowboat at the dock. Tim and Dave handed them the small boat with Terry's ashes and the three men headed to the middle of the pond. Just before sunset, Dale and Jace placed the boat in the water and lit small torches that they laid on the grasses. It lit right away and cast a beautiful reflection on the darkening water. The bagpiper played "Amazing Grace" and, for a full five minutes, we watched the pyre float along the perfectly still water and listened to the music.

When the fire burned out and the boat fell beneath the water's surface, Rev. McDonald closed the service and we all made our way back to the bonfire up the hill. People embraced and wept, some lingered to watch the water and the beautiful surroundings.







We lit candles and gathered in lawn chairs around the roaring blaze. The rest of the evening was filled with stories about Terry, humorous memories of his antics, and the Phi Psi brothers in attendance singing "Amici," the Fraternity song. Our friend's dog Lupen barked and jumped during the entire song, prompting several of us to insist that Terry had found a way to join us after all.


On Sunday, June 7, we held Terry's Party: he had always insisted that there should be fun and celebration, not tears and sadness. So we celebrated Terry's life by including things he loved in a place he loved. At the Woodruff Place Town Hall (the gathering spot for our neighborhood), we hosted more than 300 friends and family with sushi, karaoke, and Maker's Mark (the true bourbon).


Dale and Jace played a few songs with The Key Strummers, a children's ukulele band that Dale first joined in fourth grade. Here is a shot of Dale during his solo, "I Like Mountain Music." The guests looked at Terry's life in photographs and shared stories and anecdotes for more than three hours.


For the more mature attendees, there was a CD of out-takes from an audio recording Terry had made a few years ago. The finished product was used at an SPJ awards banquet; the leftover cursing and screw-ups were captured on CD with a backdrop of lively music. In a word: hi-larious.

The kids kicked off karaoke about 8:30 and soon everyone was joining in. Several people asked where we got the karaoke machine; my answer: from our living room. We use it regularly in our family of hams! It was great fun to see Terry's spirit come alive on stage through renditions of Jon Bon Jovi, Frank Sinatra, and everything in between.

We closed the night back at our house with the last 20 or so people lighting sparklers in a circle on our front lawn. We burned 100 sparklers continuously, until the last box was empty. It was a great way to end the celebration of a life that burned brightly and was extinguished far too soon.

The Final Thump

Above: Sunset in Cabo, Terry's favorite place on earth.

See details for Remembrance and Party at bottom of this post.

Note from Lee Ann:
Terry died today, June 2, 2009, at 1:21 p.m. His final blog post follows…

So this is it. I have shuffled loose the mortal coil. My soul has been hurled into the great void. I am taking the proverbial dirt nap. I bought the farm. I kicked the bucket. I have checked out. Crossed the River Styx. Bought a pine condo. Ceased to be. I am wandering the Elysian Fields. Gone belly up. Checked out. Cashed in. Sleeping with the fishes. Danced the last dance. Run down the curtain. I am pushing daisies. I have joined the choir invisible. I have paid Charon’s fare. I have succumbed. I have sprouted wings. I am history. I am dead.

I started composing this final message in early October 2008. My once-Grade III Anaplastic Astrocytoma with features of a Grade IV Glioblastoma Multiforme had morphed into a recurrent malignant glioma within 13 months of my initial diagnosis. Where brain tumors are concerned, the word “progression” is the most unkind word of all.

When that became clear in late August and early September, I knew that it was not really a matter of if I was going to die, but when and how to make the absolute best use of the time remaining, whether that was two months or two years.

I never viewed this disease as a “gift” or that I was on some kind of “journey.” It just was. There was no way of knowing how this thing appeared in my brain so I tried not to waste any time or energy wondering what I should have or could have done differently. That would have been an exercise in futility. I think I recall one of my doctors telling me early on that there was no way to determine the cause of 98 percent of primary brain tumors. I was probably in the other two percent that didn’t forward one of those damn chain E-mails to my eight closest friends.

I can’t deny there were times when I felt down about the whole situation. Hell, who wants to die in their mid-40s? Not me. All things considered, I would rather just be going about my life with Lee Ann at my side, watching Dale and Jace grow up and live their lives…and hopefully getting our tile roof replaced one day.

I have no idea what lies beyond.

I do know that if love transcends the boundaries of life and space and time, I have amassed more than enough to carry me safely to my next destination. And I hope that I have left enough behind to help light a path so that we may one day meet again.

And especially to Lee Ann, Dale and Jace…wherever you go and whatever you do, be happy and know that my love will always be with you. Forever. I cannot imagine what my life would have been like without the three of you in it. It was a great ride.

So long for now…
Love,
Terry

Assistant Editor's Note:
Mrs. Melonthump would like you all to participate in events planned to remember and celebrate Terry. Thank you.

Terry's Remembrance:
Saturday, June 6, 8 pm
At the Country House of Sara and John Trittipo
Near Eminence, IN (45 minutes from Indpls)
Map to location (link here)
Please bring chairs for lakeside event and bonfire
Casual attire. Light refreshments.

Terry's Party:
Sunday, June 7, 7 pm
Woodruff Place Town Hall
East Drive, Woodruff Place
(between E. 10th and Michigan Streets)
Casual attire; black clothing discouraged.
Terry's favorite things: including munchies, karaoke and Maker's Mark.

The Most Bitter Pill of All

Lee Ann here:
Terry has been out of the hospital for more than a month, resting at home in hopes of getting better. We have been tending to him with healthy meals, medications, massage, and lots of good conversation.

It's been a busy month for the whole family. Terry's parents stayed until the 22nd (a generous gift of six weeks!) and have made a quick trip home to OKC. They will return soon. Dale and Jace are rushing toward the end of the school year, in the flurry of activities that signifies the approaching summer.

On May 16, Terry kissed Dale goodbye as he left for his first official high school prom, donning a brand new tuxedo. Dale wore his father's cummerbund, cuff links, braces, and bow tie (the real thing, of course). Our elder son looked like a young James Bond! --Pictured here with Terry's mom, Joan

Jace and Ed (Terry's dad) took a tour of the Indianapolis Colts practice facility recently, thanks to a connection through my brother, Jay. They saw Peyton Manning's locker, stood behind the media podium, and posed on the practice field. They returned home bearing horseshoe goody bags for everyone. Terry loved looking at the photos and hearing about the tour, taken on the hallowed ground of his beloved Blue.

We have all been doing our part to make Terry comfortable and nurse him back to health. Unfortunately, despite our best efforts, Terry deteriorates a bit more each day. He is still the loving, funny man that I fell in love with 23 years ago, but the light is leaving his beautiful eyes. He gets confused frequently and his memory is failing. Also the verbal zingers Terry is famous for have become few and far between.

We have adapted our living room to accommodate Terry's hospital bed where he spends his days; at night, I sleep in a trundle bed next to him. The fog that surrounds him is so very frustrating and it breaks my heart to see him founder this way. He sleeps the vast majority of the day and struggles through his limited waking moments with his typical courage and good humor.

Terry's oncologist has determined that the symptoms Terry is experiencing signify that the tumor continues to grow rapidly and there is nothing more to be done to combat his cancer. The nurse service that we use now to monitor his health and control his pain concurs. They all feel that we have limited time left.

So we try to respond as best we can to his needs and requests and embrace each moment. This morning when he woke up, he wanted champagne; so we popped open a bottle, poured it into a flute (do it up right), and he enjoyed a glass of the bubbly. There's very little I'll deny him now...

And while I write these words with an unbelievably heavy heart, I know that you all have been with us every step of the way and we don't feel alone. Terry's family, my family, our neighbors and friends have been and continue to be a tremendous source of strength to the four of us. Terry was always so grateful to have so many people care about his fight for health. It has been humbling to see the outpouring of concern. Thank you for all of your encouragement, love, and unfaltering faith during this two-year roller coaster.

You should know that, months ago, Terry wrote the last entry for this blog and saved it on this computer. I've never peeked at it, nor will I.

But, when the time comes, that will be the next entry you read here--from the Melonthumper, himself.


Love,

Lee Ann

Update from The Harper Homestead

Lee Ann here. I thought it was time to give you all an update on Terry since he was discharged from the hospital on April 21. (and Terry was nice enough to grant me blogging rights)

He has been resting at home fairly comfortably, with no pain from the pancreatitis. His blood tests have shown that the platelet count has returned to normal ranges and that's a good thing. And doctors have determined that the pancreatitis was due to the drug therapy only so no gallbladder surgery will be necessary; also a good thing. However, the team of doctors overseeing his case have deemed it unsafe for Terry to continue taking the Sutent since it dislikes his pancreas so. Very disappointing news, of course.

The thread of irony that has followed us through so much of the last 22 months-plus continues on: We've found a drug that shrinks your brain tumor but you can't have it!

So, moving on, we have started another (fourth!) chemotherapy. It is easy to take (pills morning and night) and the side effects have been minimal. He is eating real food again with a low-fat/low-cholesterol slant to appease his pancreas. Despite the myriad of menu items he can't eat, he's been a real trooper and a great patient.

Terry is still pretty wiped out from his April from Hell: a month of hospitalizations, pain, and medications. For the time being, he will stay at home to focus on getting stronger and healing. Terry's parents (Ed and Joan) have continued to help us and will be here until late May. They must get back to OKC to address the lives they left behind there when we called them and they came running. I'll say it again: God bless Grandparents.

Terry has entertained a few visitors: his brothers Tim (from DC) and Dave (from OKC), his Aunt Pat (from FL), and Uncle Mike (the surgeon from OH). Chicago friends Shane and Michelle came to town for the Indianapolis 500 Mini Marathon as well. He received at least 40 birthday cards on April 30 to celebrate his 45th year. His Facebook page was jumping with birthday greetings too. All good wishes (personal, paper, and virtual) were most appreciated.

Some lessons that Terry has shared from his most recent experiences, since we all know how wise he is: sleep is a really good thing; pain is a really bad thing; daytime television sucks.

Words to live by...

More soon. And thank you for all your encouragement and support.

Love,
Lee Ann

The photo at right is from Terry's February night out with his boys--Ed (Terry's dad), Jace, John, Shane and Ron. These great friends came to Indy to enjoy a night of red meat, stories, and Maker's Mark. Cheers to the boys!

This update is coming to you courtesy of Terry's blushing bride, Lee Ann.

To complete research for our upcoming book, "Emergency Rooms of America," Terry and I traveled to Bethesda, Md. We presented ourselves as a man with a brain tumor experiencing agonizing abdominal pains and his very concerned wife.

We're quite certain that by sharing our experiences in literary form, we will provide valuable insight to that guy with a gash needing stitches at 2 in the morning or that gal with a migraine on Memorial Day.

OK, maybe not. This is how the events of the last two weeks have unfolded, Reader's Digest-style.

We flew into Baltimore on Monday, April 6, looking forward to our NIH appointment to learn the results of the first round of Sutent. There had been some disruption in the medication schedule, due to blood pressure issues, so we were a little anxious about the visit.

However, what had begun as abdominal discomfort for Terry at 12:30 pm became sheer and utter torment by 5:30 pm, leaving him writhing and moaning on our deluxe king-size bed at the Hyatt Regency. So, armed with info from the NIH, we headed to Suburban Hospital's ER to address the stabbing pain that kept him flat on his back.

Unfortunately, it was a surprisingly busy night in the metropolis and so took three hours to be seen, and another two hours to get pain medication. Terry joked that I was a few minutes and one more polite ask away from channeling Shirley MacLaine in Terms of Endearment ("Give my daughter the shot!!")

After a CT scan and lots of poking and prodding, the doctors determined he was suffering from acute pancreatitis. The doctors at the NIH confirmed that this complication was a rare but possible side-effect of the Sutent. By 3 am, Terry was resting comfortably (thank you, Dilaudid, pain medicine of the gods) and I was relieved to hear him joking again.

Over the course of the next three days, Terry was given lots of fluids, less and less pain medication, and more solid foods. By the time he was discharged on Thursday afternoon, we were encouraged about his pancreas. I mean, who really thinks about it, until it hurts like hell.

On Friday 4/10, we completed the majority of our previously scheduled appointments at the NIH and headed to the Neurology Clinic to await time with the doctors and review the results. We learned from our good friends there that Terry had experienced the greatest results so far on the Sutent trial. His scans showed a dramatic difference from a month ago. We were speechless, dumbfounded even.

We headed home that evening (esctatic and exhausted) and Terry took it easy for the weekend. He stayed home on Monday too; I assumed he was just wiped out from the anxiety of pain and the anticipation of results of our NIH visit. We'd followed the new diet (low fat, low cholesterol) to the letter but he was eating a lot less than normal. Unfortunately, Monday evening, I came home to find him frozen by pain and we were off to the ER once more.

The current diagnosis is more of the same. The pancreas does not like the Sutent and we must treat it with a great deal of TLC. For the time being, Terry will continue to push pain meds and drink clear fluids at IU Hospital (in downtown Indianapolis). The hope is that after a few more days, they will help the pancreas heal itself and the pain will be gone. He's a very good patient, cracking jokes with the nurses and complimenting their stellar patient care.

Luckily, Terry's parents are here now and helping us tremendously. Thank Heaven for grandparents. And thank you for all your support through the trials and tribulations of Terry (another book!). Seriously, we genuinely believe that your prayers and positive energy keep us going.

PS Terry was discharged from IU Hospital on Tuesday, 4/21. For now the pancreatitis seems to be calmed however his body is not recovering well. They tell us that the biggest issue now is the low platelet count (the thing your bone marrow produces). He cannot have any surgery to address the pancreatitis, nor take the Sutent, until that improves dramatically. Blood tests tomorrow 4/23 will tell us if that is happening. We visit with the oncologist next week.

More soon.

Keep those cards and letters (and blog comments) coming. We'll read them all to Terry and he loves the show of affection (such a ham!).

Love,
Lee Ann

Excuse Me, Is There Room for Tumor Under Your Sutent?

Tumor? Two More? Get it? Even with a life-threatening illness, I still retain my status as Wittiest Male in the Yukon High School Class of 1982, no?

And like Black Flag's Roach Motel, I sure hope there is plenty of room for those malignant cancer cells to check in, but not check out.

Lee Ann and I returned from Bethesda and the NIH this past Wednesday, March 11, and I took my first dose of Sutent later that evening. Thank God, I experienced no ill effects from the new chemotherapy. The only noticeable change is a desire to listen to the music of The Backstreet Boys. I fully realize that this is probably not normal for a man on the verge of his 45th birthday, but those dudes sure do sing well together...at least on their records. I can't bring myself to see them live. Just can't do it. Nope.

I head back to the NIH in two weeks - March 24-25 - for some additional lab work and a visit to the clinic. My dad is traveling with me since the vision loss I have experienced has made me a bit leery of traveling alone. It's just the left peripheral vision, but it can still result in lots of bumping into objects and people. It should be a pretty easy trip although all of the traveling of late is becoming tiresome. And while there is no legal requirement at this point, I have decided that my driving days are over for now. It was a very tough decision to make since it involves a major loss of independence, but it was probably the right one for my safety and, more importantly, that of others. My loss is Dale's gain as I think he enjoys getting the extra time behind the wheel. Lee Ann has taken on extra chauffeuring duties with her usual good humor and grace. Don't know what I would do without her. I definitely won the lottery with her.

I will return to the NIH again two weeks following the March 24-25 visit and then again a month later. Those visits will involve MRIs to determine whether the Sutent is having a positive effect. If it is, we continue, if not, we find something else. Pretty simple.

And on we go!

Love,

Terry
xoxox

Your Tent? My Tent? No, Sutent.

It's about 1 a.m. on Tuesday, March 10 while Lee Ann and I try to catch some sack time at the Doubletree Inn in Bethesda in preparation for the next couple of days' activities. After carefully considering our options when we learned that my brain tumor had started to grow again, we decided to come back to the NIH in the hopes of enrolling in a new clinical trial here involving a drug called Sutent.

Like the old ads for Certs that advertised Certs working like, two, two, two mints in one, Sutent attempts to do the same thing to tumor cells, but without the added benefit of fresh breath.

Now, I ain't no scientist, just a simple Oklahoma boy so don't quote me on any of this stuff. This is just how it was explained to me and Lee Ann.

The first thing Sutent attempts to do is cut off the tumor's blood supply, much like Avastin, the drug I was on for a few months between Nov. 2008 and Jan. 2009. But tumor cells are smart...and hungry. You may be able to throw up a roadblock that will fool and starve them for awhile, but just like a car that is held up by a 50-car pile up on the turnpike, drivers are eventually going to find another way around the roadblock. Tumor cells are the same way. Sutent is one in a new goup of drugs being developed called "back road blockers." The idea is to keep that initial roadblock in place long enough to create additional roadblocks so when the tumor cells figure out it is time move on, there is no place for them to go.

Again, I'm probably getting some of the science wrong here, but Dr. Fine at the NIH has always done a good job of speaking in what I like to call "animals, shapes and colors," so that I have a good understanding of how this stuff is supposed to work.

In our process of checking out the available options, my neurosurgeon in Indianapolis wanted to perform a rather radical procedure that would remove the occipital lobe of my brain entirely and parts of my parietal lobe. While Dr. Fine was rather ambivalent about surgery last fall, he definitely thought it was the wrong way to go this time. At best, the procedure might get 70% of the tumor; I would sustain permanent loss of my left peripheral vision from the middle of my left eye over and the same from the middle of my right eye looking left. And then there would still be upwards of 30 percent of the tumor still left that would have to be addressed with more chemotherapy of some kind. Since my peripheral vision has already been impaired, I thought I would just as soon leave open the possibility, however remote, that a new treatment might at least provide some hope for improved vision if the tumor progression is halted or the tumor even starts to shrink.

We also traveled to Duke University to visit their brain tumor center there. They agreed that surgery was not their recommended course of action for most of the same reasons Dr. Fine was against it, too. The trial they had open was enrolling 48 patients all of whom would be treated with Avastin. 24 patients also would be treated with Temodar while the reamining 24 would receive etoposide, another chemotherapy drug. Those receiving either Temodar or etoposide would be decided randomly, much like the flip of a coin.

What eventually led us back to the NIH was that Sutent is new to me. I have already been treated with Avastin and Temodar and both ultimately failed although I experienced the longest progression-free period of time with on Temodar.

Sutent is a daily oral chemotherapy that I can take at home. I will have to return to the NIH on a monthly basis for an MRI and neurological exam. As long as the drug is working and there is no new tumor progression, AND my body is tolerating the medicine, I can remain in the trial. If it eventually stops working, there are still other options to consider that are available today and other places to check out that are on the cutting edge of brain tumor research. With each recurrence, however, the tumor becomes harder to beat back the next time, but I don't think I'm ready to toss in the towel just yet. The docs tell me that while people with Glioblastomas do not ultimately have a rosy prognosis, my tumor is still in a non-critcal area of my brain so that continues to work in my favor. We continue to try to keep the spirits up and the optimism high. It's not as easy as was, say, say six moths ago, but Lee Ann, Dale and Jace have been great, not to mention the rest of my family and all of my friends. I will do my best to keep you posted as we enter this new phase of treatment.

Love to all with malice toward none...except aggressive brain cancer cells,

Terry
xoxox

Unable to Remain Stable

Riddle me this...What both sucks and blows, but is not a Shop Vac?

If you answered, "Terry Harper's recurrent, malignant brain tumor," then you are today's big winner!

I learned last week - Feb. 4 - that less than fourth months following my second brain surgery and after five rounds of chemotherapy coupled with supposed miracle drug Avastin that my most aggressive tumor had broken through the lines of defense and is once again "progressing."

Although Lee Ann and I had suspected for a couple of weeks that something might be askew because of some vision problems I was experiencing, the actual confirmation came as quite the ole gut punch.

At the moment, we are scrambling to weigh the available options and make a decision as to the next course of treatment. Those options may include more surgery, more chemotherapy or clinical trials in which I may be eligible to participate.

I have a consultation scheduled back at the National Institutes of Health National Cancer Institute (Dr. Howard Fine) on Friday, Feb. 13, and am scheduling a consultation at Duke University for early next week.

My local doctor has offered to put me on Carboplatin, another chemotherapy, but to do that immediately would rule me out of any possible trials because you have to come into those "clean," i.e. not taking any other treatment.

So that's where things sit at the moment. I should have a plan of action in place within two weeks, at the very latest. As always, time is a factor.

I shall keep you, loyal readers, in the know as I learn more in the coming days. Keep that good karma flowing this way!

Love,

Terry

xoxox

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

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.

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...

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!

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!

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.