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