John's 1st Day of Radiation/Chemo

Hi all. John speaking. Today I began radiation and chemotherapy. All went well. Radiation only took 15 minutes or so. It was painless and minimally inconvenient. Karen watched me from the control room with the wonderful technicians and Dr. Russell Green (my gifted radiation oncologist).

Then I swallowed my first daily dose of 140 mgs of Temodar, my chemotherapy tablet. That's going to take a little getting used to. It makes me a little queasy and fatigued. Ice cream helps with the queasiness. It's also a very expensive medicine ($1,400 a week retail). Thank God for good prescription insurance. The cost to us is so minimal it's like paying in monopoly money. I think insurance companies and the pharmmaceudical companies create a lot of paper revenue and expense for accounting purposes with this type of charge. I'd be interested in knowing the true cost of this medicine.

I'll be on these two therapies (radiation and chemotherapy) for six weeks. Then the radiation is done and the chemo gets increased for 6 months (I think). Once the chemo goes solo, I will use it for 5 days in a 28 day cycle with 23 days in between for recovery.

What then? I pray for a full recovery. Karen prays with me, as does Ashley, Justin, and my family and other loved ones. I know you all do too. I read in Lance Armstrong's book "It's Not About The Bike" that he's agnostic. I couldn't survive without my faith in God. In that way, I feel I am more fortunate than Lance.

That's all for now.

Paul and Mary Anne's Friend Brian

It would be hard to count all of the people that have come out of the woodwork to help John, but I would certainly be remiss not to mention Paul and Mary Anne's friend Brian Goldsmith, M.D. Brian is a radiation oncologist for Radiological Associates of Sacramento Medical Group.

So why do I mention him here? Because Brian generously offered to review John's pathology report to offer a second opinion, and John's pathology files have been faxed to him.

To quote John in a previous post:

"My network of friends, allies, and family has been stronger and more powerful than ever. Mary Anne's Oncologist friend, Brian, has offered to review my pathology files. Brian is of a newer, fresher school of cancer practice, one in which success is an expection, even for brain cancer patients. How blessed am I that my sister has such a friend as this?"

So, here's to Dr. Brian Goldsmith! Thanks so much for lending your expertise to our family! Cheers, all!

Blog Links

When John's journey began, I started a Links section on the left hand side of this page. My purpose was to inform everyone about the people and locations serving John, the science surrounding the disease, and expertise available on the brain tumor front.

Recently I have heard two other places mentioned and I thought I'd pass them on to John and everyone else reading this blog.

The first is the Duke University Medical Center Tisch Brain Tumor Center. It is full of hope, experts, and possibilities. Of course it is located in Durham, North Carolina; a hop, skip, and jump from Nathan and Danielle.

The second is the U.S. National Institute of Health Clinical Trials site. This website lists 177 current glioblastoma studies that are seeking new volunteers.

The Duke site also lists a number of clinical trials.

John, you know I like Native American teachings. I'll close with this one:

May the sun bring you new energy by day
May the moon softly restore you by night
May the rain wash away your worries
May the breeze blow new strength into your being

-Apache blessing

John's Roller Coaster Week

As I mentioned yesterday, this was a roller coaster week for me in my battle with cancer. Tuesday was especially tough. On Tuesday I met with the doctor who will direct the radiology aspect of my treatment. Frankly, I'd rather not mention the man's name because, as far as I'm concerned, he's on thin ice with me and is on probation as my provider. I may have to fire him and find another man or woman: one who fights.
In my opinion (and Karen's), the man's assessment of my chances was unnececessarily harsh. He spoke in terms of stop-loss and of limiting the evitable and growing cognitive deficits and of the waning years. I don't believe he thinks this disease can be defeated. He spoke of me as a victim. I nearly came across his handsome desk and smacked him for that. A VICTIM?! Don't EVER use that term to describe me or anyone fighting this tough opponent. We are only victims if we resign ourselves to be. I am no hero but I will go down fighting to the end. Glioblastoma hasn't defeated me. I am not so certain of my radiologist/oncologist. And this was the initial consultation.
The consultation was the longest, sadest hour of my life beyond compare. The worst part was watching how it tore Karen apart. When it was over I just had to call Martha and cry like a child. What kind of doctor specializes in a desease he doesn't think can be beaten? He should have become a coroner. Karen calls him Dr. Death.
To his credit, the doctor saw what he was doing and apologized for starting off on the wrong foot. He offered to refer me to someone else. No. I want him to tow the line. I may have to teach the man faith in science and the science of faith. Either that or he's history. I, on the other hand, will turn out just fine. I can be angry when I want, can't I? It can be a useful emotion. Just ask Lance Armstrong about that.
On the other hand, there has been much to be optimistic about this week. My network of friends, allies, and family has been stronger and more powerful than ever. Mary Anne's Oncologist friend, Brian, has offered to review my pathology files. Brian is of a newer, fresher school of cancer practice, one in which success is an expection, even for brain cancer patients. How blessed am I that my sister has such a friend as this?
My step-daughter Ashley has given me hours of quality time. We've really enjoyed our time together.
Yes, Karen has fractured her ankle . Karen suffered a hair-line break in a hospital visitor's chair as I slept. Dr. Atwood gave her a cool sports-style cast and proscribed two more weeks of wear (as opposed to just limping around on it). If Karen had sought treatment immediately instead of refusing it for two weeks she'd be further along today.

for all I have to asy for now. I am feeling a little lonely doing all the blogging. If no one else is really interested in pgrticipating with this, my posts will become a good deal less frequent. I appreciate how busy your lives are.

John's Cancer Roller Coaster

It's been a momentous week in my cancer battle. I intend to blog at some length tomorrow about this. Tonight the sandman is calling (I hope).

More soon. jt

Hi From John 3/22/08

The doctors are taking another weekend to get back to Karen and I with my diagnosis. I meet with my oncologist (Dr. David Einspar) and my brain surgeon (the brilliant Dr. Matt Wills) Tuesday.

A special shout-out and thanks to Karen's sister Susan and her husband, Jerry. They made a very cool gift to me today. It's the Lance Armstrong Foundation's Resource for Cancer Survivors, Survivorship Notebook. I like it very much. It contains all sorts of survivors' stories, tools, topics, and updates. I am sure I'll get a lot of use from this impressive resource.

Tomorrow it's off to the early Easter Service at 1st Pres and then out to Dwight, KS for Easter dinner with Karen's mom and Karen's family. Life is beautiful.

Update by John 3/18/08

Hi all. I don't know if I told everyone but Karen has a nasty sprain from trying to get up from a hospital room visitor's chair during my second stay a week ago. It hasn't healed like I think it should have so we're getting it xrayed tomorrow by our family doctor.
We still don't have a pathology report on the biopsy taken almost a week ago. No news is still better than bad news. I remain truly optimistic and feel emotionally, spiritually, and physically prepared for whatever the Lord presents to us. Thank God, I have those around me who are much more confident, stronger, and smarter than me and who are using their God-given talents on my behalf. I humbly expect miracles.
I hope it's stopped raining in Ozark and that there's no flooding damage. Your city's story was featured on CNN today. Please keep me informed about your weather situation.
I noticed a couple of stragglers in the Tiff Tourny III pool. Don't be caught on the outside looking in.

March Madness!

Let's Dance!!!

An Obstacle That Can Be Overcome

More so than any time since John's original diagnosis, I feel a great sense of hope and optimism this morning. Hearing words from Karen yesterday like "primary brain tumor" and words from oncologist Dr. Einspahr like "this is an obstacle we can be overcome" have made a difference. We all have been changed by the events of the last four weeks.

Of course there is much uncertainty ahead, and we anxiously await the results of further testing and the meeting of the treatment team on Tuesday.

It is inevitable that faith enters the picture at times like these. Our family is largely composed of Presbyterians and Catholics, with a bit of Lutheran, Jewish, and Methodist traditions mixed in. In fact, there is a long line of Presbyterians in the Tiffany/French family. Martha and I are Presbyterians and raised our children as such. John, an active Presbyterian, likes to refer to we Presbys as the "frozen chosen". It's true that we are not pushy with our religion; we value reason, and we rely heavily upon grace. We are largely inclusive and accepting of all earnest spiritual paths, as we believe that God dwells in the hearts of all. We try to convey to those around us that we are people of God through our actions, not through proselytizing.

Enough about Presbys. Like Job, we all are wrestling with the big questions these days. Why, why, why? Cancer really sucks, doesn't it?

My point is this: I believe that God has been present in the hearts, hands, laughs, tears, hugs, and love that have been freely expressed within this remarkable family, whose closeness has been forged by adversity since the tragic loss of their mother back when John, George, Martha, Bob, and Mary Anne were all children.

God must have been present, guiding the skilled hand of Dr. Wills and all the skilled workers at Stormont Vail, because John bounced back from two surgeries in record time with no further damage to his brain.

The divine is near and in John as he continues to win over even the most skeptical, and to make new friends along the way. And most obviously of all, God has been present in the indomitable will and courage of John, and he has been a model of faith to all of us. It's an honor and a privilege to witness this.

Sure, we all continue to wrestle, but in these tough times, we cling to our faith. It has carried us this far.

Thanks to all of you on John's team for surrounding him and the rest of us in your thoughts and prayers.

"Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible." -St. Francis of Assisi

John's Quiet Evening

Hello everyone. It's Friday night now and Karen and I are home relaxing. I hope I've had my last craniotomy of my lifetime, but you never know, do you?
In the last couple of weeks, I've learned a great deal about my faith, fear and courage. Most of all, I've learned some major lessons about borrowing strength and courage from those who know and love me. It is my humble honor to be the recipient of such grace.
The doctors are still analyzing the nature of my disease. The doctors are certain now that I have brain cancer. The cancer probably originated elsewhere in my body. My body killed it there. I am completely healthy at the original site which may never be known.
The doctors are also confident they now they have the biopsy they need to identify and treat my cancer. My cancer is very rare, however, in that the markers don't match any pattern they have ever seen. I am one for the science books. Oddly enough, this has proven to be a highly encouraging development. The sample has been sent to the University of Nebraska for testing. We will know more soon.
I can't wait to continue this fight. You are all in my prayers. Thanks and I love you.

A Note From the Patient

There's no way I can express in words my gratitude for the support and love I have received throughout this experience. I love you all! We are winning this fight as one!

Evening at Home

Here it is: Live Blogging! We are sitting at John and Karen's house enjoying ourselves. We are watching Something's Gotta Give with Jack Nicholson, Diane Keaton, and Keanu Reeves for some comic relief. A church member brought Fettucine Alfredo, salad, and bread sticks from Paisano's Restaurant and so our stomachs are filled, but we still have room for Katherine's Girl Scout cookies.

Karen also is recovering tonight. While trying to help John in the middle of the night last night, she caught her foot in the hospital recliner and sprained her ankle. So, she's getting by with a wrap, elevation, heat, and tender loving care this evening.

There are some very important supporters of John that we haven't displayed in a blog photo yet. John and Karen's daughter, Ashley and her husband Dan have been there through it all, providing tremendous emotional and physical help in times of need. Here they are with John this evening.Also, I have permission from John to post the next photo. It's the official scar photo. I post this photo as a milepost for John. Someday when he is well, we'll all look back at it to see where he was back in March of 2008. The horizontal scar above his ear is from his most recent surgery and the more vertical scar is from his first surgery. And so, now that I've explained it, here it is with its PG-13 rating!So now you know what this incredible man has endured with great strength, poise, and grace in the past two weeks. The hospital workers made a new friend and, indeed, we all were inspired by John's wit, intelligence, and positive attitude throughout his stays at Stormont Vail.

We now move ahead as a team with determination and confidence, placing all our bets on John. Bless you, John, and thanks for sharing this journey with all of us. We truly do love ya, man!

Footnote to Top Ten List

RE: Dr. Matt Wills

#1: Neurosurgeon Matt Wills is a graduate of the University of North Carolina School of Medicine.

#2: Martha cornered him this morning after he visited with John, and he said that the tissue will be prepared in wax and sent to Washington University's Siteman Cancer Center, the regional specialty cancer center. He was sure that the tissue would yield results this time.

#3: John will be released later today!

Top Ten Things to Be Thankful For

We were all encouraged by the results and the strength that John mustered after his 2nd craniotomy, so we brainstormed a "Top Ten List of Things We Are Thankful For"

I'll start with number 10:

10. John got a brand new wardrobe from the hospital. It includes a fine pair of flesh colored socks with skidproof soles.

9. John did not have to eat ICU food this time. In fact, they fed him a cheeseburger a couple hours after surgery, and we smuggled in a hamburger for him.

8. John has an especially "magnetic" personality these days. We think it's because of the staples in his head.

7. John has a brand new I-Pod. He's adding his own music collection, and refuses to put Martha's Rod Stewart Classics Collection on it.

6. John still has 99% of his full head of hair.

5. John has a strong and growing support system of people thinking about and praying for him each and every day.

4. John and his neurosurgeon, Dr. Wills, are on a first name basis. So, John's new friend, Matt Wills, and he are tight. Dr. Wills is straight forward and does not mince words. John respects and appreciates that approach, as he values knowledge and intelligence greatly, and wants to know all the facts.

3. John's second surgery was not nearly as extensive as the first surgery. His recovery has been swift and smooth, and there have been no side effects. The tissue harvested from the surgery was viable and diagnostic.

2. Dr. Wills determined from the MRI done yesterday that there have been NO changes in the tumors since the original scans on February 22.

1. John is strong, inspirational, courageous, and determined, and insists that he is going to beat this thing.

Out of Surgery

John is out of surgery. The pathology department said that the tissue is viable and will be diagnostic. We should know the outcome either tomorrow or Friday.

Since the tumor was on the periphery, right above the ear, the surgery was not nearly as extensive as last week's surgery. "Small incision with minimum brain disturbance", Dr. Wills said. So, he will be given a room in the Brain and Spinal Care unit, not in ICU.

So, this is good news. We will see John very soon.

Thanks to all of you for your prayers and efforts on John's behalf.

John is in Surgery

John went into surgery a little after 2:00 today.
Martha and I arrived at the hospital at around 2:20. Ashley, Laurie, Karen's sister Sue and daughter Erica, and Tracy from the church are in the waiting room. Karen went home to get a jacket.

Surgery will take a couple hours.

This time they will take the small tumor out and send the tissue sample to the pathology lab to make sure it is a identifiable before they close. If it is not an identifiable sample, they will go back in to get another sample.

Keep the prayers coming,
Will update later.
Greg

Liverpool Fan John, the Defending Champ

John's surgery has been scheduled for 1:00 tomorrow.

He has had a good day and has entered the prestigious NCAA Tiff Tourney III at espn.com as we head into March Madness. His "game" name is Liverpool Fan John, alluding to his true sports passion, European soccer.

Sports fans, who will attempt to dethrone this champion this year? Will the trophy leave Topeka? Only time will tell!

Anyway, Martha and I are working 1/2 day and heading up at around 10:30. We should be in Topeka by 2:45. We will keep all of you updated as new news comes in.

Please continue to think about, send good vibes, pray, and whatever else you can do to deliver good will and strength to John. He remains steadfast and ready to put this ordeal behind him.

Moving Forward After a Setback

After sending tissue to a cancer center, the pathology report from John's craniotomy last Wednesday has been labeled non-determinative. Therefore, he must return to surgery this Wednesday. This time Dr. Wills will remove one of the three remaining tumors. The surgery is in the periphery of the brain and will require a smaller incision and less time in the operating room.

Although this is a setback for John, he is feeling strong and is ready to get this whole nightmare behind him. He felt very well today and said that he got a lot done. The news this afternoon certainly dampened his spirits.

I found these two quotes today.....

"There will be days you don't think you can run a marathon. There will be a lifetime of knowing you have." -Unknown

"Human beings are made up of flesh and blood, and a miracle fiber called courage" -George Patton

Live Strong, John. We'll be there for you.

A Time to Rest

John was released from the hospital yesterday afternoon, and we had a relaxing evening and following morning. He is feeling well, and enjoyed spending time with the family Friday afternoon and Saturday morning. Here are a couple pictures that we took on Saturday morning.
We are all hoping that the followup pathology report determines the cancer type so that John does not have to have surgery again.

Thanks to all of you for your thoughts, concerns, and faith.

Going Home

As I sit here in the family waiting room, John is getting ready to go home. He has recovered from brain surgery very well.

The source and type of cancer, however, continues to present a problem and a challenge. Pathology reports did not reveal the type of cancer, so steps are being taken to address this issue. Tissue samples have now been sent to an outside cancer center for analysis.

Anyway, if the pathology results come back inconclusively this time, (results should be in on Monday) they have decided that the neurosurgeon will again perform surgery. This will be some time next week, preliminarily on Wednesday. This time the surgeon will remove all of one of the smaller masses, assuring that they get some active tissue this time.

According to the oncologist, once they get the specific tissue type, they will set the course of action with radiation.

So, uncertainty reigns this morning, but John is so ready to get home. He is tired of being here in the hospital and can't wait to get home. Well, they've given us the go to take him home, so off we go!

John Loves Everybody!

"I Love ya, Man", was the comment everyone heard as they entered John's room last night. He was so chatty, we had to leave to let him rest. God Bless that boy.

Thursday morning, John is up, ready and semi-rested. The nursing staff kept him up most of the night checking his vitals and making sure he is healing well. His head is not shaved, like we thought, so his hair is shining along his bright face.

He will be transferred out of ICU into a regular patient room this morning. Dr. Wills, the Neuro Surgeon, is amazed at his progress. He is doing great. The surgery went very well and the biopsy is at pathology. We are waiting for the results. Karen has been the rock of Gibraltar for us all.

Thank you all so much for your prayers and support. We appreciate your communication through the blogs and know you are all here with us.

John is amazing and we are all so pleased with yesterday's results. He is a determined young fellow.

Mary Anne, the younger, wiser sister

Surgeon Report

Neurosurgeon Matt Wills met with us after the surgery. He said that the surgery was straightforward with no complications. Most of the tissue was necrotic, meaning dead. He explained that as the blood supply for the tumor runs out, the tissue dies. The tissue was soft and easy to remove.

Pathology results will determine what the cancer type is. (adenocarcoma, melanoma,
etc.). Dr. Wills still does not believe that the cancer originated in the brain. He speculated that perhaps it died out at its point of origin.

Preliminary results indicate that John has complete movement and body functions should be intact.

No prognosis was given, as the surgeon said that they don't do that.

So, we will see John soon. He will be in ICU for at least a day. I'll post again later today.

Out of Surgery 1:55 pm CST

We just got word that they are finishing up the surgery. We are waiting for the surgeon to talk to the family.

Update 12:40 pm 3/5

Hospitals do run behind schedule. They actually started the surgery at 11:30 am CST. The nurse just came by to report that everything is going well so far. They expect the surgery to be complete at around 2:30 CST. Thanks for coming by....

Hold On

When I awoke this morning, the words of this poem from a book called Many Winters, by Nancy Wood, came to mind.
I share it today and offer it up as a prayer for John and all of the rest of us:

Hold on

Hold on to what is good,
Even if it is a handful of earth
Hold on to what you believe,
Even if it is a tree that stands by itself
Hold on to what you must do,
Even if it is a long way from here
Hold on to life,
Even when it is easier letting go
Hold on to my hand,
Even when I have gone away from you.

As mighty warriers, we pray for strength and courage today. God bless you, John

John in Surgery

A few minutes ago, John was taken into surgery. I'll update when I can.

Thanks for all of your prayers,
The family and friends

Surgery Early Wednesday

John goes in for surgery at 7:00 am. Wednesday. He has chosen to have as much of the mass removed as possible. Time is of the essence. There is concern that the follow up after a needle biopsy would just take to long, so they have decided to remove as much of it as possible, and began radiation therapy in two weeks.

Unfortunately, they have now ruled out any possibility of a brain abscess. However, the PET scan revealed nothing. They are now saying that the tumor's origin is in the brain.

The surgery is supposed to take around four hours. They will then move John to ICU for a day or two, and he will be in the hospital for at least 4 days.

We are together tonight. John is prepared for the battle, and can't really see any other option. He is strong and resolute in his decision and in his faith in God. The surgeon has performed this surgery before, and is confident that he will cause no further damage.

John's current symptoms include some numbness in the left side of his body, partial vision loss, and short term memory loss.

So, please pray for John's continued strength and recovery from surgery tomorrow. We value greatly all of your concerns and prayers.

We're In This Together!

Dear John and Karen,
We want you to know that we'll be there for you whenever you need us. Our thoughts and prayers are with you always.
Love,
Martha, Bob, Mary Anne, and the whole team!

Gratefulness.org

A while back I ran into a web site that I like. Thought it might help some of you. So, I'll pass it on.......
http://www.gratefulness.org/index.htm