Here, now, never before available in stores are those early communiques I sent to family and friends about having what I would later learn was a Grade III glioma - an anaplastic astrocytoma to be precise - and the unique opportunity to write it provided.
Monday, July 2: Me and My Brain Tumor
I learned on Sunday, June 24, that I am the proud owner of a small brain tumor.
I was playing one of my sons' video games at home when I experienced a seizure. I knew something was wrong when the image I was looking at on the TV screen appeared in my vision no matter where I looked. The fact that it appeared to be encased in disco lights didn't help matters. I was able to alert Lee Ann that something was wrong before the lights went out. The next thing I remember is waking up in an ambulance on the way to the ER. I experienced another seizure in the ER. The rest of Sunday and Monday is a blur of tests which eventually led to the discovery of a small tumor on the lower back portion of my brain on the right side.
The "good" news is that the tumor is easily accessible and appears to the neurosurgeon to be "non angry" meaning not malignant. We won't know for sure, however, until it is removed and analyzed. I am scheduled for surgery at 1 p.m. on Thursday, July 12, at Indiana University Hospital in downtown Indianapolis.
If all goes according to plan, I should be home by Saturday or Sunday. I have been told by the neurosurgeon to plan to spend the following six to eight weeks at home recuperating. I feel pretty fortunate to have the head of neurosurgery for University Hospital as my doctor. He is the same surgeon who removed two brain tumors from Lance Armstrong before he went on to win seven Tours de France. I am oiling up my bike now in anticipation.
At this time, my plan is to return to work on Tuesday, September 4. If the doctor clears me to return sooner, I will. My DVD collection should keep me entertained for maybe a week.
So there you have it. If you can spare any good karma next week, I will take all I can get.
Saturday, July 14 (two days after brain surgery)
It's amazing to think that less than 48 hours ago my skull was open and a tumor was being removed from my brain, and today I am sitting once again in the comfort of my own home. I can't wait to climb into my own bed later this evening and feel the stray foot of my wife sneaking over onto my side of the bed every now and then.
I am so very appreciative and grateful for all of the prayers, karma, chi and general positive energy that has been directed my way since this saga began on June 24.
We expect to receive the final report from the pathologist sometime this week that will dictate the next steps in my treatment/recovery. While the neurosurgery residents have been very careful to tell me to wait until the final report, the neurosurgeon has performed this procedure about 1,000 times and based on the circumstances of my particular case, his experience makes him 99.9 percent sure that I am due for some chemotherapy.
If the pathology report calls for radiation, then an oncologist will be added to the team that currently includes my regular doctor, the aforementioned neurosurgeon and a neurologist.
The current plan calls for spending the next six to eight weeks focusing on healing. Lee Ann has suggested I take up macramé to help pass the time. I'm leaning toward decoupage myself.
So that's the poop as I know it today. Again, my heartfelt thanks to everyone for their care and concern. I am truly blessed with a wonderful wife and family, as well as you all, my friends. I feel like the luckiest boy on the face on the Earth.
Thursday, July 19 (the day we received the pathology report on the tumor)
Howdy -
I'll spend more time later disseminating this a little more broadly, but wanted to you all know ASAP...
The pathology report on my brain tumor is in and is mostly as expected...a grade 3 glioma although there are some features of a grade 4 (grade 4 being the worst for you unwashed).
I have an appointment scheduled on Monday with a radiation oncologist although my skull needs to heal before any radiation can commence. So actual treatment may still be a few weeks away. I'm guessing all of the options, risks, etc. will be spelled out to me next week, as well. An appointment also is in the works with a neuro-oncologist, i.e. the chemotherapy guy.
I'm continuing to focus on what Dr. Shapiro - my neurosurgeon - told me last Saturday morning when I asked him if I would be dead in a year.
"Perhaps, but not from this."
And there, for the moment, you have it.
Friday, July 20
For those who are interested, here's the latest. I apologize for the length, but I have found writing about this to be therapeutic. Some of those closest to me would probably say it’s more about my need to be the center of attention. You be the judge…
On Thursday, I received the pathology report that turned out to be pretty much what we were expecting. My tumor was a Grade 3 glioma although there were some features of Grade 4 present. For those seeking additional knowledge, the "grades" are established by the World Health Organization with Grade 4 being the least desirable or worst.
On Monday and Tuesday, I have appointments here in Indy with a radiation oncologist and a neuro oncologist (chemotherapy) to explore treatment options. Regardless, I have to wait until my skull heals before I can start any treatment. That will probably be two to three weeks.
On Wednesday, I have an appointment with the head neuro oncology dude at the National Institute of Health’s National Cancer Institute in Bethesda, Maryland. I also am working out the details for a consult with the brain people at M.D. Anderson in Houston. I have learned that those places, along with Duke and UC San Francisco, have recognized expertise in dealing with brain tumors.
I sent an E-mail to the National Cancer Institute doc on Thursday afternoon and immediately received an auto response saying that there is no way he even screen, let alone respond to, the hundreds of E-mails he receives each day. I must have been particularly charming because when I went back to my E-mail within about an hour, I had a personal response from him telling me that he was leaving for vacation next Thursday, but if I could be in his office on Wednesday, he would make room on his schedule for me. So that’s where I’ll be…with my iPod and plenty of stuff to read.
And while Indianapolis may not be a recognized leader in dealing with brain tumors – testicular cancer, yes, just ask Lance Armstrong – the folks in Houston know my neuro oncologist here and spoke very highly of his reputation and abilities. I haven’t even laid eyes on him yet so was glad to hear that. It certainly would be convenient to get treated here and not have to be hopping on a plane to D.C. or Houston regularly although the prospect of racking up even more frequent flyer miles than I already have is appealing.
Aside from the annoying staples in my head (which thankfully come out on Monday) and feeling like I am wearing someone else's scalp on part of my head, I feel pretty much the same as before all of this started.
One odd side effect of my surgery is that my visual perception is distorted ever so slightly. Reading is not a problem, but people look different than they did before. For example, watching The King of Queens freaks me out because star Kevin James’ head appears to be disproportionately larger than his body. My surgeons told me that was not entirely unusual given the area of my brain where they were poking around, but that hopefully things will get back to normal over time. If the alternative is taking a dirt nap, I can live with Kevin James having a gigantic pumpkin head. Or just not watching so much television maybe.
I appreciate so much all of the cards, E-mails, phone calls and, of course, care packages that have come my way in the last few weeks. Lee Ann has taken to hiding the iced cookies so that morbid obesity does not become the next issue with which we have to deal.
If you're interested in seeing a picture of my grisly scar, I'm happy to share. It's pretty rad. I certainly understand if you're not. (WARNING: Disturbing Image Follows!)
And there you have it!
July 30, 2007
I’ll try to be brief without scrimping on the pertinent details…
Last Wednesday, I traveled to Bethesda, Maryland to visit with the chief neuro-oncologist at the National Institutes of Health’s National Cancer Institute (say that five times fast). I left that appointment feeling more encouraged and optimistic than I have been since this saga began in late June.
The treatment plan laid out for me by the NCI chief was essentially the same as the one recommended by Team Harper here in Indianapolis. So that was reassuring. As soon as my head is sufficiently healed, probably in a week to 10 days, I will begin a course of radiation therapy, coupled with chemotherapy, which will last about seven weeks. The radiation will occur every weekday for 33 days, the chemotherapy will be one pill a day for 42 days in a row.
At the end of the seven weeks, I will be given a one month respite then – after a post radiation MRI - will start up again with chemotherapy for the next two years. I will take one pill a day for five days in a row out of every 28. MRIs will be scheduled every two to three months to check for recurrence.
Despite the potential unpleasantness associated with radiation and chemotherapy, I am told by my doctors that I am an excellent candidate to respond favorably to what is considered the “gold standard” of treatment for high grade gliomas: I am young, in good health, my tumor was very small and I have no neurological deficits as a result of the tumor (e.g. no loss of vision, motor skills, etc.). So I guess that’s about the best I could have hoped for.
I continue to be extremely grateful for the support shown to me and my family. I don't think I'll ever be very good at sudoku, but I have enjoyed the coloring and comic books I have received. Thanks again.
One last observation...I spent close to an hour getting a pre-radiation MRI last Friday. My head was encased in a special mask that had been molded to my melon about an hour earlier for the purpose of keeping it immobile so the radiation can be directed at the exact same spot every time. I was given some ear plugs to help muffle the pounding, pounding, pounding beat of the machine. When I was done, the tech asked me how I was doing. Seeing as I had had nearly an hour to think about it, I came up with this: It was like being in the worst techno dance club in the world. Not only was the record stuck, but there was no one hot and sweaty grinding up against me.
So there you have it for now. I’ll plan to be in touch again after the treatment gets underway.
August 30, 2007: My Smooth Pate
As you know, I have always been very proud of the thick, lustrous mane of hair I have been able to cultivate lo these many years. Alas, the radiation caused some serious hair loss on the back of my head...about a three-inch strip that stretched from ear to ear. So tonight, with the support of my loving family, I paid a visit to my stylist and the result is attached.
I plan to keep it smooth until the radiation ends and then let it grow back...all of it, I hope!
Other than the hair, I am feeling tip top. The steroids I have been taking to keep my brain from swelling and oozing out my ears have provided the side benefit of making me a veritable bundle of energy. I actually asked my doctors to start weaning me off of them so I can relax a bit. No side effects from the chemotherapy either for now so I'm just enjoying the energy while I have it. If the wheels fall off in the next week or so, I'll just listen to my body and take it easy.
And there you have it!
September 8, 2007
It has been more than a month since my last detailed update so I thought I would bring you up to speed. Feel free to forward or delete as you deem appropriate. My last mini-update about a week ago let you know that I shaved my head since the radiation was making my hair fall out in the back, creating a bit of a Forrest Gump/Shawshank Redemption kind of look. Not good.
I am not quite sure how I feel about the clean look yet, mainly because the steroids have caused me to gain about 10 pounds which has me feeling a bit like Marlon Brando in Apocalypse Now. “The horror…the horror…” I would prefer the lean, mean Bruce Willis look and will work on that when I am off the steroids in a little more than a week.
I am exactly two-thirds of the way through my radiation therapy, having completed 22 of 33 scheduled sessions. The radiation has been running like Mussolini’s trains until the past couple of days…I have been in and out in about 20 minutes. A few new patients have jumped in line ahead of me and gummed up the works a bit, but, all things considered, a few extra minutes of wait time is better than taking a dirt nap. And one of the techs is a huge Beatles fan so he plays my favorite Fab Four tunes every morning. So it’s all good.
The chemotherapy is coming along nicely, too. As I probably mentioned in a previous E-mail, the chemotherapy is/are pills I take at home each evening. No ill effects from that yet either (knock wood!).
My final day of chemotherapy is Sunday, September 23. My final radiation blasts occur the next day on Monday, September 24. There is a bell at the Cancer Pavilion for patients to ring when they have completed their treatment. The plan is to make it family affair and ring that mo-fo to beat the band. I am considering using my position as Executive Director of the Society of Professional Journalists to make it a media event. At the very least, we’ll be sure to get a few snapshots for the scrapbook.
And then I get a month off from any treatments or doctor visits! I’ll be attending SPJ’s national convention during the first week of October and then taking the Harper lads on a majestic tour of the many wonderful sites available to the south in the Commonwealth of Kentucky. Planned stops include the Creation Museum where we can see how dinosaurs and man walked the erf together; a visit to the Maker’s Mark Distillery in Loretto; a day in historic Bardstown; and a day at the track in Keeneland. All things young, impressionable minds need for continued growth and understanding of the world in which we live.
I am scheduled to return to the National Institutes of Health’s National Cancer Institute in Bethesda, Md., on Tuesday, October 23 for my post-radiation MRI and then a visit with the chief neuro-oncologist genius – Dr. Howard Fine – on Wednesday, October 24. Upon returning to Indianapolis, I will meet with my local neuro-oncologist – Dr. Edward Dropcho – to get started on the chemotherapy again. That should last for another two years – pills for five days, off for 23 days, etc. – with MRIs scheduled every two months to keep an eye on things.
Cankles and politics aside, Hillary Clinton had it right when she wrote “It Takes A Village.” I continue to be overwhelmed by how family and friends have stepped up to make this one of the most amazing experiences of my life. And it’s been mostly the little things that have made the most impact…driving me to radiation in the morning and then to work; rides home from my co-workers; a bag of delicious tomatoes delivered here; a tasty tater tot casserole delivered there; cards, letters, DVDs and books arriving in the mail almost daily; visits from out-of-town family and friends just to hang out.
I really don’t have the words to express my appreciation other than to offer my continued heartfelt thanks for your love and support. It truly means everything to me.
