Stepping stones

  

I saw Dr. George Bobustuc, my oncologist, on Monday afternoon to go over the results of my Jan. 5 MRI scan, and everything looks great. The brain scan even shows improvement from my excellent Oct. 19 MRI — the tumor cavity is shrinking even more, and around the cavity there is a reduction in the contrasting enhancement that might point to a possible recurring tumor, lingering dead cells or scar tissue. The absence of such enhancement is a positive sign of healing. And as with the Oct. 19 scan, there are no indications of lesions anywhere else in the brain. My blood work also continues to be very good. All of this is great news. 

Dr. Bobustuc told me these results mean that the Temodar chemotherapy pills are having the desired effect of keeping the cancer in check and preventing it from producing another tumor. He expects to keep me on the monthly Temodar program for another 12-18 months, and expects similarly good results when I get MRI scans done every two months. His exact words were: “I don’t expect anything to happen in the next year, or even in the next two years.” He said it may even be “many more than two years before there is a problem” (meaning recurrence of a tumor). The way he put it, we cannot say the cancer is gone…but it has effectively been “put to sleep.”

I went into today’s appointment mentally prepared to deal with any outcome. It is natural and easy to let these bi-monthly, follow-up MRIs become focal points for anxiety, and I allowed myself to slip into that mode for the first two. But going forward, I will try to resist that tendency. From now on, the MRI will be my friend. I will see it for what it is — an incredible diagnostic tool. Dr. Bobustuc emphasized that I (and by extension the people who care about me) should not worry about a time bomb going off every time I go in for an MRI. He said the frequency of these scans will give us all plenty of time to react and adapt the treatment approach if signals change anytime down the road. But the bottom line is that anything that does come up will be detected very early — so there are likely to be no huge surprises with any single MRI.

“Nothing bad is going to happen overnight,” Dr. Bobustuc said.

So I’m not looking at my future MRIs as dreadful dates with destiny. They merely will be stepping stones on what now looks like a blessedly long walk. And the stream they cross is not the dark river of death. It is the rushing current of life.

NOTE: The image with this post is by an architectural stained-glass artist from Indiana named Charlotte Ann Paul. It is just one detail from her beautiful installation at the University of Wisconsin-Milwaukee’s Lampham Hall Science Building. The round shapes represent living cells, which I think look sort of like stepping stones. I don’t know Charlotte, but she made a nice comment on my last post so I checked out her website. You can find more of her beautiful work here: www.charlotteannpaul.com

‘The long shot’

I wrote this piece in May 2000, for the occasion of the wedding of my friend John Glionna and his beautiful bride Lily Xie. John is an LA Times reporter now based in Seoul, South Korea. But he was based in Los Angeles when he met Lily in the late 1990s. John grew up in Buffalo, N.Y. Xie Li Ping (Lily) was born and raised in Beijing, the daughter of a general in the Chinese army. She came to America on her own as a young woman and carved out a career for herself as an ace accountant. It always amazed me that John and Lily were able to find each other and fall in love.

I’m a wordy S.O.B., and this turned out to be too long to read at the wedding in its entirety. So the guests at the Santa Barbara ceremony (including the Chinese general) just got an improvised, stammering, abbreviated version. Below is the full text, which I just rediscovered today (1/8/10) when cleaning out some old files from my computer. Ten years later, I’m still inspired by the story of John and Lily and what it can teach us about the mysteries of life, love and fate. So I thought this was worth posting.

50th Birthday in the Missouri Ozarks

My entire family treated me to the best birthday of my life in October. It was number 50, but because of everything that’s happened this year it meant far more to me than just a round number. We went to cabins in the Missouri Ozarks (where my family used to vacation when I was a child) and just enjoyed being together for four glorious peak-of-Autumn days. All of my siblings and their families came from all over the country: Kathleen and her husband Richie from Las Vegas; Tim and his wife Julie from St. Louis; Brian, his wife Sue and their kids Timothy, Julia and Elizabeth from Philadelphia; Ellen and her partner Stacy from Los Angeles. Meanwhile, my lifelong buddy Dave Noland drove down from Kansas City to surprise me…and my friends Paul and Debbie Conklin drove to St. Louis on the last day of the trip to meet up with us, carve up Halloween pumpkins and watch the World Series on TV. You’ll see all of their pictures in this video, along with a few vintage photos from my childhood vacations in the very same locale.

The thing I loved best about my birthday: My family made a complete mockery of that stupid “Birthday Song” — which only has only six words. The six words are as follows: ”Happy,” “Birthday,” “To,” and “You” repeated endlessly, followed by ”Dear,” and ”[Whatever Your Name Is]” in the final verse. Just six words. What a dumb song. Why do people sing that song to each other? What does it even mean?

Anyway, they sang it to me every hour on the hour. It was pretty funny.

But on the morning of my birthday, my family all gathered around and sang a REAL birthday song to me. The best birthday song I’ve ever heard. It’s the music that you’ll hear in the accompanying video. And they sang the whole thing, each and every verse, each and every word (way more six). Singing this particular song in this particular situation was my sister-in-law Julie’s idea. She even brought the CD, and cranked it up on the only audio equipment available — a retro alarm clock CD player in  one of the rustic cabins.  Thanks Julie. I love you, and will never forget what you did, even though you made me cry. Just to get back at you, I put it in a video slideshow that will make you cry.

Today’s top story

Today I had my first M.R.I. scan in three months, and got some very good news: No recurring tumor. The radiation and chemo drugs have done their job splendidly thus far, and the brain cancer that was diagnosed in late July is being held in check. My neuro-oncologist, Dr. Bobustuc, said he was “very happy” with the results of the scan not only because it shows no recurring tumor but because it shows no lesions or tumors popping up anywhere else in my brain.

So all of this is as good a report that someone with my condition could have hoped to get. About the only thing better would have been if the M.R.I. had detected that I was about to give birth to a cancer-free, identical twin of myself. But when I aggressively cross-examined Dr. Bobustuc about that scenario, he insisted that it was medically impossible despite the reams of documentation I brought with me from my own research into the matter. (Damn you forever, Internet!)

Now I shift gears to the standard follow-up chemo regimen, which is five doses of pills on consecutive days on 28-day cycles. That means five days on, 23 days off, five days on, 23 days off, etc. Each daily chemo dose will be double the strength of the daily doses I took for 42 days straight during radiation, but because it’s going to be in short cycles I’m expecting the cumulative effect (fatigue, etc.) to be much more manageable.  I’ll be getting additional M.R.I.s every two months to check on progress. So my next M.R.I. will be in early January.

This maintenance regimen should give me plenty of hope to go on for at least six months to a year, the doc said. After that, if my body starts to build up resistance to the Temodar chemo drug and it loses its effectiveness there are other options for other chemo agents that each have the potential of adding months at a time, consecutively, to my life expectancy. And all of that is GREAT news, considering that most people unable to get treatment in my situation would already be dead by now.

Meanwhile, I’m feeling better and stronger each day. Rode 10 miles on my bike on Saturday. Doc says I can even play golf soon – which would be a true miracle, since I never could play before.

I’ll keep everyone posted on future developments. Thanks.

(Production note: Golf joke courtesy of Patty Huff from a phone conversation several weeks ago. I’ve been saving it up for just the right time.)

The last Sunday song: Ancient Highways

Instead of a brain tumor, my Dad had me growing out of his head when he was my age. Which would be worse?

This will be my last blog post for a while. So I thought I’d hold down the fort here with a slideshow I made of personal pictures to go with a Van Morrison song I love called Ancient Highways. The photos bring together some of the themes from earlier in the blog and some family history as well as some happy snaps from lots of fun times I’ve had with great humans over the years. If you don’t see yourself in the slideshow, please don’t feel left out. Just enjoy it for what it is. I didn’t even make an attempt to represent everyone I love and who means most to me. That would have taken three weeks. And I didn’t have much energy on Saturday. I did what I could with the pics that were handy. (The video is about 9 minutes long, so you might want to settle in with a cup of coffee or a martini, depending on the time of day.)

Thanks for reading, everyone. I’ll do my best to keep you posted on further developments. Have a great Sunday.

The last letter

The book I made out of my parents’ letters back and forth during World War II was a big hit with my siblings. Each of them got a bound, hardcover copy of the book. Most of them browsed through looking for interesting details that popped off the page, or picked out letters written around the time of big events in the war. I also pointed out some of the best stuff to them — such as the letter in which Eddie (my Dad) proposed to Lucille (my Mom) on her 23rd birthday in 1944. (From England, he coordinated with his oldest sister Annie in Kansas City to shop for a ring and make sure it was delivered to Lucille’s home the same day.)

Anyway, my sister-in-law Sue was the most voracious reader of the 560-page book. She attacked it as if it were the Oprah Winfrey book-of-the-month selection. She sat down with it and started from the beginning and kept reading the letters in chronological order, hour after hour. But a couple weeks ago she confessed to me that she had quit reading about 60 pages from the end because she couldn’t bear the idea of the story coming to an end.

Here’s the thing, though. The letters do eventually stop going back and forth but the story never really does come to an end — at least not within the covers of the book. The last letter in the collection was written from Eddie to Lucille on Oct. 18, 1945. He was just sitting around in Frankfurt, Germany, waiting for his final orders to be shipped back home to the U.S. That word would come through on a moment’s notice, and he’d be out the door for a journey home that would take a month or more aboard a repurposed cargo ship. So he didn’t know as he wrote this letter that it would be his last. There is no big drama or summing up here. But as I typed this letter into the computer back in 2007, it was a poignant moment for me because I knew it was the last letter and that my perfect little listening post on my parents’ world from 1941 to 1945 was shutting down too. 

 The rest of the love story would be up to Eddie and Lucille to tell over the next six decades — in person, not by mail.

 POSTMARK: OCTOBER 19, 1945, U.S. ARMY POSTAL SERVICE.

TO: Miss Lucille Smith, 902 North Liberty, Independence, Missouri

Frankfurt, 18 Oct 1945

Darling,

Since I have a bit of spare time I may as well dash off a few lines to you to keep you posted on the latest dope from over here. I don’t know much in addition to what I have already written you. Am still figuring on leaving here about the 8^th. So I am keeping my fingers crossed until that day comes. It seems that the rate of redeployment of troops back to the U.S. will be a bit slower now due to shipping, et cetera. Still if I leave here on the 8^th I should be home in approximately a month with good luck.

Today Duncan and myself were awarded the Bronze Star. They took some pictures and if I leave before they are developed I will have them sent along to me later. The medal is rather pretty. It is a five pointed star made of bronze and it has my name engraved in the back of it. I also got a ribbon to wear on my chest and a small pin which is a duplicate of the ribbon which is for civilian clothes. That is the one I want to wear the most of all. It is a very nice decoration and will be something I will show our kids whenever I want to cite myself as being an example of how one should behave. What do you think of that? Can’t you just picture me giving a lecture to our son like this – “That is the way we did it in the Army in the European Theater” – How about that?

Well I suppose I have written enough for this time my sweet. My mind just doesn’t seem to operate very well these days with the thoughts of you and home so predominant. I suppose it wouldn’t be a good idea for me to write too much because then I would have nothing to tell you when we are together in person. I know you will get tired of my stories pretty quickly, however.

I haven’t received any mail since I last wrote you. I know how you must feel too because it seems all the time now is sort of a void and will be so until I see you and hold you in my arms once more. This place around here is getting more sad every day. I sure am getting tired of telling everyone goodbye. Each day some one of my old buddies comes up and shakes my hand and tells me he will be leaving very soon for the U.S. I sure do hate to see them all go too but know that the sooner we all get home the better for everyone concerned. Still some very good friendships have been formed and when we get ready to part company then is when we really realize it the most. Of course such is life and we must expect that sort of thing.

I suppose I have raved on enough for this time. I should get back to work now for a change I have been sort of resting on my laurels now and taking it very easy – you know me and my failing health. Well sweet, bye for now and hope to see you soon.

‘Nite, my darling.

I love you

Eddie

   

Reunited: December 1945

Wedding Day: February 1946

Ringing the golden bell

With Ellen, my radiation mask and my certificate of completion

 My 30th and final radiation treatment was Thursday. Right outside the door of the room where I got all my treatments, there’s a little, gold-colored bell hanging on the wall. By custom, all patients ring the bell right after their last treatment. So I pulled the chain, and the other cancer patients and their relatives who happened to be sitting there at the moment in the waiting room started clapping and cheering for me like I’d just won some big award. The radiation techs even handed me a little certificate that looks like a diploma, signed by all of the people who have been zapping my brain since August 20. In this world, just being able to ring that bell qualifies you for celebrityhood.

 My sister Ellen was there to record it all simultaneously on video and still camera, which added even more to the paparazzi atmosphere. She’s a great photographer, so all of her pictures are better than the one here. Unfortunately she’s not in any of them, so I’d rather use this shot. That T-shirt I’m wearing will be instantly recognizable to anyone who was working in the newsroom of the Orlando Sentinel during the historic hurricane season of 2004 when we were hit by three major storms in the span of about six weeks. In those days of widespread outages, “Got Power?” seemed to be the only question anyone was asking, so the graphics department just decided to have T-Shirts made up to save us all some breath.  I love the shirt. It’s an especially great shirt to be wearing on your last day of cancer treatment.

That's my last pill, Chopper. It's not a treat!

On Thursday morning I also took the last chemo pill I’ll be taking for at least another month. I get a break now to help me recover and get over this fatigue that’s really hit me hard the past two weeks. It will be a slow process. The medical people said the side effects of the radiation will last at least 2 to 4 weeks beyond the final treatment. But at least I know I’ll be feeling better every day starting today (thanks Fish). My goals for the next month are to ease back into an exercise routine, take my bike out for a decent trail ride in the cool weather and maybe even sneak in a round or two of golf.

I’ll also keep this blog going for a couple more days (maybe one more letter on Saturday and then maybe one last video on Sunday), and after that I will use this space to provide people with updates on my progress as needed. I still need to figure out a way that anyone who wants to can sign up for future bulletins. I cannot thank everyone enough for all the wonderful comments here in addition to the cards, e-mails, food and gifts that have been sent to my home. Your support has been the main thing that has kept me going.

One major lesson driven home to me so far in this process is that when you get cancer, it’s not just a scary thing that happens to you. It happens to everyone you love, and on some level it happens to anyone you’ve ever known or touched even indirectly and who still cares about you at all. And everyone just needs to be allowed to process their own feelings about that in their own way. Keeping up with this blog has been my way. Your individual response, whatever it is, has been your way. Lots of people have been praying. Some folks like my sisters and brothers have come to my house to wait on me hand and foot. Other friends have done things such as start Scary-Mary spreadsheets that assign rotating, caregiver responsibilities that result in mountains of food being pumped into my house that I could never, EVER expect to eat no matter how long I live. Lifelong friends have come to my house to pull weeds in my garden or help me install a new TV set. Or they’ve made me world-class quilts or get-well cards. People like my friend Annie Burns have sent me things such as edible fruit arrangements that have arrived on a Saturday afternoon, making them just perfect for football-watching parties. Still others have decided that the best possible response to my situation is to come to my house from far-flung places (such as Seoul, South Korea) to mix me Bloody Marys, help me wash my dogs, and to just hang out quietly because I’m too weak to accompany them to nightclubs. Whatever. I’m not judging anyone. It’s a big world out there and everyone is different.

Some people have just been thinking about me and sending me e-mails or blog comments or just keeping their thoughts to themselves – and not doing anything else. I don’t care if you haven’t sent me a card, or an e-mail, or a fruit basket, or said a formal prayer. If you have even just been thinking about me, for even one second in one single day, that’s all a prayer really is. So that’s all that matters. I love you for caring. Thank you.

Since I’m kind of weird, I ultimately look at having cancer in an inside-out sort of way. I see it like throwing a party. At this particular party, I just happen to be the host — and you all just happen to be the guests. But the secret of a good party has always been very simple: It’s an experience that the host and the guests  must create together. There’s no “guest of honor.” It’s just us.

I think pretty much the same secret applies to coping with cancer or dealing with your own feelings when someone you care about has cancer. That’s why I’ve been diligent about sharing my story and my other random thoughts and experiences with you on a daily basis, and why I’ve been so appreciative of your support here and through other channels. If we do it right — and so far I think we have — we can turn any piece of crap that life hands us into a golden bell.

I love Ellen

 

Stacy (left) and Ellen at the Getty Museum in Los Angeles

I don’t know if it’s even possible to remember something that happened when you were only 15 months old. So call me a liar, but I think I remember the day my newborn sister Ellen came home from the hospital. I remember being in a back bedroom of the house taking a nap when my grandmother opened the door and poked her head into the room to tell me I had a baby sister. I remember being so excited I jumped up from my sleep and began trampolining up and down on the old, springy, twin bed. I even remember what the wallpaper looked like in that room.

Could a 15-month-old kid really remember such a thing…or even be capable of jumping up and down like that not long after learning how to walk? Why wasn’t my grandmother at the hospital with her daughter (even though it was the fifth child at that point)? Could this be some kind of manufactured memory that has morphed in my mind with another similar memory — like the time Ellen came home from the hospital when she broke her leg on the swingset as a little girl? Or the time I pushed her down the basement steps by accident and she came home from getting patched up after that?

Maybe so. I will embrace all reasonable doubts about this story. But in the end, I’ll stick with my original version. I’ll just say I remember when Ellen was born.

Me and Ellen (as kids)

Anyway, you wouldn’t think a guy with a big sister as wonderful as  Kathleen and big brothers as great as Tim and Brian could ever hope to have a little sister as cool as Ellen. But that’s how lucky I am. Ellen is the coolest. She’s always been smart and beautiful and tough as hell. That time I (accidentally) pushed her down the steps, she came up smiling with two black eyes. When we were kids, she was a better athlete than most of the neighborhood boys and she could beat many of them up. Ellen and I were best pals when we were little — whether it was riding our tricycles around on the back patio or sneaking down to the basement to listen to our older siblings’ rock-music singles at 45 revolutions per minute. As we grew older, I also enjoyed the benefits of having a little sister with loads of babelicious friends in high school and college who were always game for hanging out with me, Brian and our buddies. Ellen has a great sense of style. Any piece of clothing she’s ever bought for me is something I hang onto for years — because it’s always something someone of my limited fashion tastes would never have conceived of buying, yet somehow fits my personality anyway. (Most recently, for example, she bought my Bad Ass bandanas. She has not yet thought of anything to buy for Crazy Ass.)

Speaking of babes, that one in the picture at the top is Ellen’s partner Stacy — who is (almost) even cooler than Ellen if such a thing were possible. They live in L.A. and are both huge baseball fans. When Stacy was a teenager, she once struck a perfect 7-iron from around home plate in Dodger Stadium to a small target somewhere out in center field to win a golf-shooting contest that was held at a Dodger game. The crowd went wild. Today Stacy helps manage lots of things — including a beautiful garden — at the Siddha Yoga Meditation Center in Los Angeles. When I got sick, she went to the center and did some chants for me to help me get well. I think they worked, especially when combined with the prayers of the Baptist Bible-study ladies in Mount Vernon, Ky., my Mom’s Catholic “Holy Roller” group in Independence, Mo., and my friend Judy Doyle’s singing of the Jewish prayer for healing (Mi Shebeirach) at her synagogue here in Orlando at the beginning of Yom Kippur.

Speaking of when I got sick, my sister Ellen jumped right on a plane and flew across the country to be at my bedside on July 25 — the day after I was admitted to the hospital. She sat with me for hours in my room and in ICU after my brain surgery to help me remember what the nurses all were telling me. Last night she jumped on another plane; a red-eye flight from Los Angeles that is scheduled to land in Orlando around 6 a.m. today — right about the time this blog post goes up.

That means she will be sitting right outside the radiation room later in the morning when I get my final treatment. Unfortunately, my head will be bolted to the table at the time. Otherwise, I’d jump up and down like a 15-month-old boy who just found out he had a baby sister.

(Photo of Stacy and Ellen by Sean Holton, aka me. I’m not sure who took the older photo, since it’s cropped from a wider shot that included every living member of my immediate family in the early 1960s. Some weirdo may have been stalking us.)

I’ll always have Fargo

 

A typical stretch of road in eastern North Dakota

 A couple weeks ago I wrote about a cross-country bicycle trip I took back in 1997. These last couple of days of my treatment have reminded me of two or three really hellish days from that ride that threatened to ruin the whole trip. We’d hit these really strong headwinds in eastern North Dakota and had to grind through flat, unprotected rides of up to 100 miles a day going just 8 to 10 m.p.h., spending close to 10 hours a day in the saddle. The last day of the North Dakota segment was a 92-mile ride from a small town called Cooperstown into the city of Fargo and then across the Red River into Moorhead, Minn. The headwinds out of the southeast were predicted at a steady 20-25 mph for the entire way — so it looked like it could take as long as 12 hours to complete the day’s ride. But trip organizers told us at our camp in Cooperstown the night before that anyone still out on the road after 6 p.m. would have to abandon their bikes and hitch a ride in a support van so the tour could stay on schedule. Doing such would have meant surrender and humiliation to those of us going cross-country, because if you got in the van even for just one mile (let alone 10 or 20 miles) it meant you didn’t really ride your bike across the whole country. We wouldn’t have been able to look one another in the eye when we reached the Atlantic. So a bunch of us got together and said, ‘No way we’re getting in the ’sag wagon’ — no matter how hard the wind is blowing.’ ” We set out extra early that morning and packed a change of clothes on our bikes in case we had to pull off into some small town and hunker down on our own — and then worry about catching up with the rest of the tour a day or two later. It didn’t matter. We weren’t getting in the van no matter what.

The route map to Fargo

But that day’s ride — July 11, 1997 — turned out to be not as bad as expected. We somehow managed to dodge the worst of the winds early in the day and make better headway than we’d expected. By 11 a.m., the winds were blowing hard but we were already more than halfway through the ride. A couple hours later we crossed Interstate 29 and I remember feeling like I’d made it home to the Midwest, because I-29 is a freeway that originates in my hometown of Kansas City and shoots straight north to Canada.

Still, the thing I remember most about that day was pedaling the final 15 miles into the city of Fargo, which was probably the largest city we’d seen since leaving Bellingham, Wash., more than a month earlier. I have rarely been so happy to reach a place in my life. Finally, there were trees, houses and buildings to block the wind. We knew we’d made it. And after that, we knew there’d be nothing on the rest of our coast-to-coast journey that would stop us. The highest mountains, the longest daily rides and the worst potential winds were now behind us.

I’m getting really tired of these days of being tired. Sprawling out on the couch half asleep for most of an afternoon and still going to bed early at night is not my idea of living. It’s just like grinding out a whole day going only 10 m.p.h. into the wind on a bicycle — no fun at all. But I’m down to the wire now. I took my next-to-last chemotherapy pill this morning and went to radiation. Thursday will be the last day for both — at least for awhile.

When I pull into the driveway of my home after that last treatment, I hope I will feel just like I did that summer afternoon 12 years ago when I pedaled my bicycle into Fargo.

Cleaning up our act

The fun ends now

My dogs Chopper and Kaley have loved all the attention they’ve been getting lately. Lots of visitors and houseguests have been coming and going to help me out. When that’s not going on I’ve been taking lots of naps and the dogs have been able to just hang out and snooze on the sofa right alongside me. They love it when humans get brain cancer. For them, this gig is a lot better than the old routine of being stuck at home entertaining themselves while I go out for several hours each day to do business or run errands. And now it’s like they have a rolling court of appeal from the regular house rules I set, such as: ”no begging for food”, “no treats after dinner,” “no feeding from the table,” etc., etc. Each new houseguest brings the potential for a whole new doggie legal system and my two mutts have been taking every advantage of it.

They’re being petted around the clock, hand fed from the table, and being given unlimited access for licking all kinds of new and friendly faces. All the while, one week has slipped into another. On Monday it dawned on me that a month has passed and they’ve managed to avoid one of the most dreaded parts of their regular routine: Taking a bath.

Chopper and Kaley both hate water in any form: Whether it’s a pool, a lake, taking a walk in the rain, or taking a bath.

I have just three more days of treatment left. Chopper and Kaley’s little cancer party is about over. So I’ve finally put my foot down and started enforcing a few more rules around here. And now they smell great.

Crazy Ass needed a bath too

(Photos by John Glionna. Bloody Marys by Mike Anton)