Tuesday, May 31, 2005

One more thing...

The Rev just called with a funny (already a funny from this surgery...)

In Vinny's pre-op paperwork there were two questions that he spent some time answering...

Question One: Who may make medical decisions on your behalf? Easy... The Rev.

Question Two: Who may not make medical decision on your behalf? Initially he left it blank. I'm thinking that he figured my seester would take care of him, not allowing decisions to be made willy nilly. She suggested he think a bit more.

His answer to Question Two:
The Congress of the United States of America and/or George W. Bush

The doc overseeing this portion of the day thought it was so funny he took the paperwork to his supervisor. Because apparently the actual paperwork makes it better than just sharing the story.

I just hope that the good folks at IU know what they got into by agreeing to do his surgery :)

And the verdict...

He's keeping his kidney, folks!

Just got the call from seester... the details as I understand them:
  1. Surgery lasted about 1.5 hours
  2. Dr. F believes that the tumor that remained was mostly teratoma (the pre-cancerous cells that could cause a flare-up if left in his body)
  3. The kidney wasn't involved so he won't have an odd tilt to his body... at least because of losing a redundant organ
  4. While they had Frank where they wanted him, the surgeon poked around to check things out and they look fine

If you go to the American Cancer Society's page, here, you can learn more than you probably wanted to about teratoma. Lab results will be back probably on Thursday. This will confirm Dr. F's assessment and I would imagine give information as to what type of teratoma. As I get updates, I'll pass them along. And, if it is teratoma, it means that there isn't cancer... THIS IS VERY GOOD NEWS.

Now, for an abuse of power...we had a great weekend visiting the rents, combining friends and family. One of my favorite things was going to Shakespeare in the Park... The Tempest.

Friday, May 27, 2005


While THE Rev and Vinny prepare for their trip to Indy and perhaps for the first news bulletins post-surgery, I'll be guest blogging. I have the keys and they are letting me drive... I'm mad with POWER!

Sinister-In-Law, SueBec

Pre-surgery workout

Well, the days are counting down to Indianapolis. Frankly, I'm tired of waiting - I was ready for this surgery weeks ago. I have my packing list done, lab results faxed in, CT scans sent, work things all tied up - I am ready to go! We'll head to St. Louis for the weekend to relax and have a little fun, then it's off to Indy first thing Monday. My folks are flying up from Atlanta and we'll try to rendezvous with them.

Meanwhile, I did some pre-surgery exercise yesterday: lunch at Booches! Booches, for the non-residents of Columbia, is a venerable old burger joint (since 1882) that happens to be right across the street from my office downtown. They basically specialize in three things: burgers, beer, and billiards. My friend and I took advantage of two of those offerings yesterday; I'll leave it to you to guess which ones. The burgers are served on squares of wax paper and aren't huge, but they are heavenly. USA Today named their burgers among the top 10 in the US a few years ago. Sarah would tend to disagree with this assessment (she doesn't know what's good for her). Lunch was followed by cheesecake with a friend from the Chorale.

We had dinner with some friends last night as part of my "farewell tour" (and again there was cheesecake!) after which we seemed to break off into two "discussion groups". In my discussion group (well, group may be stretching it - it was just Emilie and me) we talked about medical procedures. Emilie had her second child by C-section, and it was quite the ordeal. She likened it to having had a Mack truck crash into her insides. It's probably very similar to what I will have to go through, with an incision from my sternum to my pelvis, my stomach muscles cut through, my intestines pulled out and later replaced. Fun, fun, fun!

I had some spare time yesterday that I unwisely chose to spend looking for information about experiences with the RPLND procedure. That was a poor choice on my part. Now I have started to obsess with some of the possible outcomes from this surgery, and that's not a good thing. Still, I emailed a guy from the TC support list to ask about his experience at IU and while this won't be a walk in the park by any stretch of the imagination, it was nice to have a complete honest assessment of what the aftermath will be like. The main thing I need to remember is to take it slowly - no rush. This particular individual was off work for 7 weeks after the surgery, but that was with a post-surgery infection.

I'm going to be introduced to a lot of things I really would prefer not to have to learn (catheters, morphine pumps, sliced abdominal muscles), but then again, that's been the story through this whole process, hasn't it? As we say sometimes in the church management world, "If you're not growing, you're dying."

Well, that's it for me until next week. We'll have the laptop with us and will try to put out an update as soon as possible after surgery. I'll keep a notebook by my side to collect my thoughts. Thanks to everyone for their thoughts, prayers, and white light.


Monday, May 23, 2005

The Rev. Recommends….

(The following is an expanded version of my column for my church newsletter in June)

One thing that I do to “escape” is read. I’m not going to lie to you; there have been times this spring when I have wanted to run away. I didn’t run, but I did escape and thus I read, a lot. I recommend the following books that I have enjoyed over the past few months as well as some that I plan on reading this summer.

Plan B: Further Thoughts on Faith by Ann Lamott. I recommend any book by her: Traveling Mercies: Some Thoughts on Faith, Operating Instructions: A Journal of My Son’s First Year, and Bird By Bird: Some Instructions on Writing and Life. Plan B is her newest book. I find myself going back to her often. Thanks to my friend P who sent me the new book for my un-birthday in March.

Tatterhood and Other Tales edited by Ethel Johnston Phelps. This book is filled with old stories about magic and adventure – folk tales from around the world – that the whole family can enjoy. It’s published by Feminist Press and has good stories for girls and boys without all that damsel-in-distress-fairy-tale-princess-has-to-wait-for-someone-else-to-save-her stuff.

Under the Banner of Heaven: A Story of Violent Faith by Jon Krakauer. Amazon.com says, “In 1984, Ron and Dan Lafferty murdered the wife and infant daughter of their younger brother Allen. The crimes were noteworthy not merely for their brutality but for the brothers' claim that they were acting on direct orders from God.” The author, “tells the story of the killers and their crime but also explores the shadowy world of Mormon fundamentalism from which the two emerged.” I found the book helpful to understand Mormonism in general and the way fundamentalism in any strain of religious belief can be dangerous. I read this one of the weeks Frank sat in the Chemo chair all week long.

Blink : The Power of Thinking Without Thinking by Malcolm Gladwell. One word: Fascinating. He talks about how we make snap judgments—about people's intentions, the authenticity of a work of art, and even military strategy in the blink of an eye. Thanks to Dr. TW for loaning it to me from his "Barnes and Noble" inspired library. It was a privilege to crack the spine of the book! Dr. TW is the brain warm up guy that Frank talked about a few days ago.

Gladwell’s also written The Tipping Point, about that magic moment with an idea, trend of social behavior crosses a threshold, tips and spreads like wildfire. I’m taking Tipping Point with me to Indy to read while Frank is in the hospital.

Freakonomics : A Rogue Economist Explores the Hidden Side of Everything by Steven D. Levitt and Stephen J. Dubner. (Again from Dr. TW’s library) This one I had to wait for Frank to finish before I could get past the introducation. I set it down for a moment and then he’s all into it and I didn’t have the heart to rip it out of his hands declaring, “But Dr. TW leant it to ME!” Frank after all has cancer (said with a pathetic whine tone) and plays that card whenever he can…

That being said, I am the last person who would willingly pick up a book about economics and read it cover to cover (end notes included) within a week. But the authors argue that many apparent mysteries of everyday life don't need to be so mysterious: they could be illuminated and made even more fascinating by asking the right questions and drawing connections. My favorite quote: “Morality, it could be argued, represents the way that people would like the world to work—whereas economics represents how it actually does work.” (p.13) Hmmmm. Seems I’ve preached about this before…show me your check book and I’ll show you where your treasure lies….

The Curious Incident of the Dog in the Night-Time by Mark Haddon is a fictional story told from the point of view of a 15 year old boy with Autism who witnesses a murder, that of his neighbor’s poodle. I read this one back in January, but find myself referring to it often. How many yellow cars does it take to make your day a bad one? One thing that stuck me as I was reading this was how much sense the boy’s thought processes made to me…..

The Seven Principles for Making Marriage Work : A Practical Guide from the Country's Foremost Relationship Expert by John M. Gottman, Ph.D. and Nan Silver. Even if your marriage is working, it is never a bad idea to check in and see if you could be doing better. Frank and I enjoyed the chapter on “Two Kinds of Conflict.” Seems there are Perpetual problems and Solvable problems; marriage can survive both kinds, if you recognize them for what they are and work together. I recommend this book for everyone who is married or thinking about it.

This is one that I’ve picked up because I read about Gottman in Blink and found his work fascinating. I’m always looking for things to help folks in my congregation who say that they are struggling. I, alas, can only find tools to help people; I don’t have a magic wand to make them do the hard work that relationships require. Nor am I able to hold their nose to the grind stone, a technique that I sometime wish I could employ….

If you are searching a book that you can read for a few moments each day one of the following three might do. These aren’t new, but are some of my favorites. Amazing Grace: A Vocabulary of Faith by Kathleen Norris. I heard her speak at the preaching conference I attended in Chicago last week. She reported that she is currently working on a book about acedia (from the Greek "akedia," or "not to care"), one of the seven deadly sins. She confessed that she’s having trouble getting motivated to write. Go figure. A friend of hers who is a Benedictine nun gave her condolences when she told her the topic she was exploring.

Kathleen Norris also spoke at the conference about her husband’s loosing battle with cancer. She described the experience in the following way: “it was like I was at sea, not knowing when we’d get back to dry land.” Others who have been care takers for those with cancer can relate. And while I know that Frank’s journey has been very successful given the nasty nature of CANCER, I, we, have still gone through many ups and downs, begin tossed upon the waters of the hopes and fears that accompany cancer.

The other two books in this category are by Dr. Rachel Naomi Remen: Kitchen Table Wisdom: Stories That Heal and My Grandfather’s Blessings: Stories of Strength, Refuge, and Belonging. In both volumes she weaves stories of healing and wholeness that are short and moving.

Dr. Remen is part of a group called Commonweal. It is a nonprofit health and environmental research institute in Bolinas, California. I read these books about 2 years ago, but was reminded of them when one of the chemo nurses was telling me about a continuing education event she attended where she learned about Commonweal’s Cancer Help Program, a week-long retreat for people with cancer. What I like best about Remen’s books is similar to what the CHP’s goals are: to address the physical, mental, emotional and spiritual dimensions of healing with cancer. Healing is multidimensional the sooner Dr.s and patients recognize this the better the journey will be for all.

And now, some of the other books on my shelf to read:

· The Heart of Christianity: Rediscovering a Life of Faith by Marcus J. Borg—scandalous I know. I really like Borg.

· A Short History of Nearly Everything by Bill Bryson (I read In a Sunburned Country earlier this year when I wanted to run away to Australia, just for a few days mind you.)

· Two by William Sloane Coffin: Credo and The Heart is a Little to the Left: Essays on Public Morality

· Walking the Bible by Bruce Feiler, his book Abraham is such a good read; this one looks very similar. There’s also an Illustrated one that is for kids that might be easier and even easier read….

· The Kite Runner by Khaled Hosseini

· The Time Traveler's Wife by Audrey Niffenegger

· Life of Pi by Yann Martel

· The Rapture Exposed: The Message of Hope in the Book of Revelation by Barbara R. Rossing

If you’d like to recommend any to me, drop me a note!

Grace and Peace,

Rev. Sarah

P.S. Frank is having surgery on May 31 in Indianapolis, IN at the Indiana University Hospital. He will be in the hospital for 4 or 5 days. We will take our time coming home and may stay at my parents’ home in St. Louis as we journey back to Midway. If you’d like to know how things are going I will be posting while in Indy.

You can send notes to us through the blog or you can go to the hospital’s web site (after May 31st) to send a get well card. The hospital’s web address is: www.clarian.org, look under “visiting information”. Thank you for all your prayers and words of encouragement.

The Mighty Methodists of Mid-Missouri

The Mighty Methodists of Mid-Missouri walked in the 2005 RAIN's Salute to Life Walk on Saturday May 21, 2005. (RAIN: Regional Aids Interfaith Network)

Twelve people joined team leader Rev. Eric for the walk through the streets of downtown Columbia. Posted by Hello
Each walker carried a flag representing someone in Mid-Missouri who has AIDS.
Five churches from Columbia were represented. We raised $300 for RAIN.

the Rev w/ her seester and Rev. Eric's daughter, THE RED HEAD Posted by Hello

Frank wanted to be like the RED HEAD, but only on his terms. So, he too sat in our laps. Posted by Hello

This may be an after lunch digestion inspection or some strange ritual between Frank and this exquisite one. Posted by Hello

Hair Update

Hi! My name is Frank and I have something to show you. Posted by Hello

The Shadow knows.....In the right light he's got a halo of fuzz, but here you can see that it is getting darker. Again, taken Sat. 5/21/05 Posted by Hello

Frank's latest Fuzz, taken saturday May 21, 2005 Posted by Hello

Sunday, May 15, 2005

extreeeeeeeeme close up of hair, taken Wednesday May 11, 2005 Posted by Hello

frank's horn...right after the CT this bump always appears, even when he's "pre-medicated" for allergic reactions....SOOOO many things could and have been said about this horn, I mean bump....Sarah Posted by Hello

Saturday, May 14, 2005

A picture is worth a thousand words

Fair warning: For those of you with squeamish constitutions, you may wish to leave the internet now.

I had my latest CT scan yesterday (Friday the 13th). The stupid hive popped up on my forehead again after getting the iodine drip, but no problems other than that. There has been some more shrinkage, however slight, but the growth is still pretty big. The lymph node/tumor is presently 4x3x9 cm, which is down from the 5x4x10 cm it was measured to be back in February (it started out as 6x5x10 cm). It's still heavily involved with the renal vein, so losing a kidney is still a distinct possibility when surgery happens at the end of the month.

Had some bloodwork done up in the chemo room, so I got to say hi to my posse of nurses. They've been livening up the place a bit since I was last there - they now have a variety of "over the counter" medications hanging on the IV poles with cannulas (or cannulae if you want to use prim and proper English) leading out of them. Some of the bottles they have hanging include STP Oil Treatment, Wild Turkey, and Viagra. It was pretty quiet other than that.

I decided to post some of the CT images, mainly because I can. I don't have any weird feelings about posting my insides online, although Sarah doesn't necessarily share that sentiment. Again, fair warning for those of you grossed out by seeing someone else's insides (in black and white 2D images).

The latest tumor dimensions - 3.3 x 4.0 cm (1.3 x 1.6 in) at its widest point. The tumor is about 9 cm (3.6 in) in length. Posted by Hello

This is from the latest CT taken on 5/13/05. The tumor and left kidney are labeled. The big white thing to the left is Frank's spine.Posted by Hello

Wednesday, May 11, 2005

A new way to amuse myself

You're thinking, "That can't be too hard", right? I've started getting tinges of neuropathy in my shins and feet. Funny thing is, it only seems to make its presence known when I suddenly jerk my head downward (as if I were trying to catch a glimpse of a bug landing on my chest). Weird. Not really a party trick, because nobody else knows that it's happening. Oh well. It may help to keep me occupied on the long drive to Indianaoplis at the end of the month.

In the non-cancer diversions area, I found out recently that a CD that Sarah and I provided some backup vocals for has been released. A friend of ours from Columbia Chorale who is an ER doctor got his undergrad in music theory/compositon and composed a bunch of songs that are chock full of advice for docs dealing with tough ER cases (disclaimer: the songs are meant solely for entertainment, not as a substitute for medical training and experience) . The musical styles are widely varied, from comic opera to Southern rock to rap to punk. Here's an example of the lyrics. This is from a song entitled "Difficult Airway" (Sarah and I and some of our friends provide the background voices):

When I intubate I like the “Mac Daddy” number three
I do it the way they trained me to in residency
Preoxygenate, medicate and slip ‘em the plastic
But before I get too spastic, I think about the
Difficult airway—every time
Difficult airway—I think of this rhyme
Difficult airway—one, two, three,
I think about anatomy

© 2003 Brain Warm-ups Entertainment, LLC. All rights reserved.

Anyway, it's pretty entertaining, especially for nerds like us. Check out Brain Warm-ups for more lyrics. You can hear samples of several tracks at Cd Baby - try before you buy! Order one for the doctor or budding med student in your life.

Tuesday, May 03, 2005

As exciting as it gets for now

I know it must seem like I'm easily amused/amazed, but I just to share this:

I have stubble!

I shaved on Sunday morning, and this morning, less than two days later, I have stubble on my upper and lower lips, on my chin, and on my cheeks. Plus my eyebrows are coming back in, and the fuzz on top of my head continues to grow.

It's all blonde, so this could be interesting.

That's all. Just wanted to share.

Monday, May 02, 2005

The word for today is...


I have started experiencing yet another lovely side effect of cisplatin-based chemotherapy: Peripheral Neuropathy. It means there has been some damage to my peripheral nerve endings (mostly in fingers and toes). Mine is fairly benign - it feels like my hands are waking up from falling asleep all the time. Anyway, I decided to check in with Dr. V's office and talked with fearless nurse Gay. I learned that the symptoms tend to reach their peak 3-4 months after chemotherapy, and may stay up to nine months before disappearing. Of course, it's also possible that the symptoms may never disappear either. Oh, joy.

There don't appear to be many effective treatments, other than things that tend to reduce the symptoms. Accupuncture is one suggestion, as is massage. I've always wanted to try accupuncture (I mean, if there were something wrong with me that accupuncture could treat - I don't go out of my way looking for folks to stick needles in my body, not counting those Neulasta shots).

Sunday, May 01, 2005

Just checking in

Happy May Day, everyone! I hope you were able to go out today and leave some presents on folks' doorsteps. If you have no idea what I'm talking about, there is a May Day ritual that involves leaving gifts (usually flowers, sometimes with other goodies) on friends' doorsteps. Usually the gifts are made anonymously. Someone tried to leave us some May Day flowers today, but with the view we have of the driveway from the living room, it's hard for anybody to sneak up on us from that direction.

We were out a a picnic for church youth this afternoon. I got to do a little horseback riding and played some catch. I was surprised how quickly I petered out, but then again, I imagine my blood counts haven't really normalized yet, plus I haven't been all that active over the last 3 months, so I don't know why I was so taken aback by my lack of any sort of stamina. Call it a mental block, I suppose.

Anyway, not much has been going on the past couple of weeks. There have been some shenanigans involving the mail order pharmacy that was sending my Neulasta shots - they sent a fifth (unnecessary) injection to the cancer folks, who accepted delivery, not knowing what it was. The pharmacy folks claim they talked to someone at the Dr.'s office ("Anna") who authorized the order, but there's nobody there who has that name. All I know is I'm not paying for a $3,000 injection that I didn't order. What makes this a little more complicated is the fact that the injection is perishable, and the pharmacy doesn't want to take back the shipment if there has been any possibility that the injection has been allowed to reach room temperature. My personal pit bull with the insurance company is on the case, since they don't plan to pay for an unnecessary expense either.

I also may be having a discussion with my oncologist regarding my follow-up treatment protocol. The oncologist basically wants me to live in the CT scanner for the next year, having scans every two months. IU's standard followup protocol for TC is chest X-rays only, since the cancer rarely recurs in the abdomen, especially after an RPLND. I'll try to get a customized followup from the IU folks after the surgery. Anything I can do to reduce my exposure to radiation is probably a good thing.

On the good news side, I spoke with the office of the FAA's Regional Air Surgeon in Kansas City about my case. Apparently I don't need to wait a year after surgery to apply to have my medical reinstated - I can apply after surgery, just need to submit all the medical records. So that's a good thing, even though the FAA's medical backlog is pretty substantial (several months at least). Maybe I'll be flying on my own again before the year is out.

I've been tracking my medical costs so far, and I got a detailed bill from the oncologist the other day. I thought it would be interesting to share.

As of March 31, I have incurred the following costs at the oncologist's office:

Blood tests: $2,894
Chemo drugs: $22,240
CT scans (1): $1,689
Doctor Fees: $2,653
Chemo Infusion (i.e., chemo nurses): $29,790
Other Meds (mainly antinausea, plus the first shot of Neulasta): $14,422
Total: $73,688

Now, these are the full freight prices. Insurance has contracted to pay only a fraction of the costs, and the discounts range from the 39% range (other meds) to almost 78% (infusion fees). What insurance has paid so far for my oncology costs has been more along the order of $30,000. Again, not a small number, but a lot smaller than it might have been otherwise.

Well, that's it for now. My life descends into hell this week as we go to work on our financial audit, so don't look for anything from me. Sarah may fill you in if anything happens. Next on the calendar is my next CT, which will be May 13.