Sunday, October 19, 2008

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

Avenue Q at Clowes Memorial Hall

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

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

From the official Web site: AVENUE Q is the story of Princeton, a bright-eyed college grad who comes to New York City with big dreams and a tiny bank account. He soon discovers that the only neighborhood in his price range is Avenue Q; still, the neighbors seem nice. There's Brian the out-of-work comedian and his therapist fianceƩ 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 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.

Friday, October 17, 2008

A Quick Update

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

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

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

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

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

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

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

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

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

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


Thursday, October 16, 2008

A Tribute

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

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

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

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

Tuesday, October 14, 2008

My Piggies Are Ready!

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

And by soaking tubs, I mean GladWare®.

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

T minus 36 hours and counting...

Sunday, October 12, 2008

Thumping My Melon Goes National!

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

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

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

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

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

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

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

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

Monday, October 6, 2008

Check Out the Big Brain on Terry!

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

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

T minus 10 days and counting!

Saturday, October 4, 2008

Doc Talk

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, October 2, 2008

Codename: Shock and Awe

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

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

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

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

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

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

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

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

Wednesday, October 1, 2008

Meet the Rest of My Medical Team

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

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

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

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

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

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

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

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