Thursday, September 30, 2010

Vidaza, It Is

After considering recommendations and options, Dori has decided to begin a regimen of Vidaza, a drug that has kept leukemia effectively at bay in many AML (acute myeloid leukemia) patients.

I fully support her decision, which is based on a recommendation from the Fred Hutchinson Cancer Center in Seattle. Vanderbilt’s team presented Dori’s case to the Hutch, and they put Vidaza at the top of their list. The Hutch has been using Vidaza more than Vanderbilt, as have several facilities the last 10 years or so. Our friend Kathy suggested it as an option since her team in Atlanta has been using it, as well, and Vanderbilt had it on their option list. Vanderbilt will administer the Hutch’s recommendation here. No travel is necessary.

This means Dori will not receive a second transplant. The doctors in Seattle and at Vanderbilt and my family now believe Dori essentially underwent a second transplant in July. Her intense GVHD (graft versus host disease) this summer suggests her donor “Hans” took a brief break before he realized he wasn’t supposed to. Thankfully, he hopped back in the saddle. Interestingly, we’ve heard this "last minute to-the-rescue" thing is rare, perhaps happening in 1% to 2% of cases like Dori’s. We are fortunate Hans got fired up again.

Candidly, I didn’t want to see Dori endure another transplant, and neither did she. If she needed to have one, she would have been her normal gritty self. But her body has been through a great deal, and we’re relieved she can pursue another course.

Vidaza has been around a while, perhaps 30 years. Studies have shown Vidaza keeps GVHD at bay, but doesn’t hinder GVL (graft versus leukemia or graft versus tumor, which we want). Vidaza also keeps open all options– including another transplant or DLI (donor lymphocyte infusion) – if necessary.

That’s not how we’re approaching it. We’re looking at about six months’ regimen of Vidaza, more prayer and clean living. Dori has begun tapering steroids and cyclosporine, which has been sorely needed. Steroids wear out the body.

Dori starts Vidaza Monday. God be with her, every step and every moment.

Monday, September 27, 2010

'Transplant Two'

Dori and I met with Dr. Jagasia last Friday. I'll blog again once we sort out more details from a very helpful and interesting exchange.

It's pretty clear Dori, whose situation looks more unique every day, essentially experienced a second transplant earlier this summer. We think Hans took a brief break before realizing he needed to get back to work. Looking back, Dori's intense GVHD for a week in July was all Hans, who was mad as hell some leukemia sneaked past his radar. Stay tuned for some analysis and potential next steps.

Friends and family were active last weekend. Donna filed a nice report about her first half marathon. We're thrilled she ran so well in her first 13.1 and appreciate what she did for Dori.

Kathryn and Will ran PRs yesterday in their final cross country meet. Conditions were very good - cloudy and a comfortable 70. Kathryn ran 1.5 miles in 11:19, besting her 12:21 and moving up to a Top 25 finish. Will ran his mile in 6:34, finishing around 13th. Both finished hard.

Dori the Treadmill Warrior continues to walk about 30 minutes every day. She loved the cool breeze that blew through the window during yesterday's walk. I biked 30 hilly miles yesterday morning. One hill blew me off my bike for the first time. The hill was about a half mile long, much of it at least an 18% grade. It was too dangerous to weave up the hill ... a speeding car would have complicated our lives.

We like simple around here.

Saturday, September 25, 2010

VH1's Top 100 Bands

Time for some lighter blogging ...

Last night, I watched VH1's Top 100 Rock Bands of all time. I caught the last two hours as they reviewed Numbers 40 through the all-time greatest. No surprise that the Beatles were No. 1, but Bob Dylan at No. 3? It was that kind of night!

Here's the list, which by and large I found to be a good run-through. I humbly submit my Top 10 with some honorable mentions. Maybe you'll share your Top 10, as well.

10. Queen - Nobody like them.
9. Fleetwood Mac - Get better every time I listen to them as a group or as solo acts.
8. The Beatles - Greatest impact on so many that followed, though I like listening to McCartney & Wings more.
7. The Doors - Mesmerizing.
6. Tears for Fears - Sister Anne would wear me out if I left them off my list.
5. Run DMC - Yo, Jay!
4. The Who - Townshend is brilliant.
3. The Police - Cross-polination of rock and reggae with Sting's voice, Copeland's drums and Summers' riffs.
2. Mark Knopfler - Yes, Dire Straits, but so much more ... blues, country, stadium rock and tremendous movie scores. How is he not in the Top 100 and Dylan is No. 3?
1. U2 - My winner based on phenomenal songs, longevity and impact on humanity

Honorable mention: David Bowie, Talking Heads, Depeche Mode, Pretenders, Simple Minds, R.E.M., Coldplay, The Kinks, The Clash, Paul McCartney & Wings, Pink Floyd, Rolling Stones, Led Zeppelin, Michael Jackson, Moody Blues, The Cars and B-52s

Go, Donna!

This morning, our good friend Donna Clements laced up her running shoes and ran 13.1 in honor of Dori. Donna's husband, Runcie, was my best friend in high school and is a super guy. I knew he'd find a special woman one day ... Donna is certainly special with her exuberant, positive example.

Dori and I were overwhelmed to receive this message this morning. We encourage you to read and consider Donna's suggested action items (Be the Match and Donate to LLS). Folks often ask us, "How can we help?" Donna has some great ideas for you!

We can't wait to hear Donna's race report!

Tuesday, September 21, 2010

The Words We Choose

Dori can't watch tense Vanderbilt games, which runs in her family. Dori and some of her relatives will vacate the room, listen for cheers and check in briefly for updates.

Saturday's football game against Ole Miss was no different. Vanderbilt took advantage of some shoddy Rebel play and put down the hammer late to upset Hotty Toddy 28-14. Dori entered the room late to join the hootin' and hollerin'. We like what we're seeing from our new head coach, who received his first game ball in 34 years. Very fun, very emotional.

Many conversations about or with Dori the last few years have been uplifting. But folks, I've heard some crazy things, too - in hospital rooms, on the phone, in our home and from strangers, medical staff and yes, family. I've probably said some things I want back, too.

The outlandishness is often rooted in fear, selfishness or insensitivity. I've brushed off most inanity fairly well, but when I see Dori hurt it's very hard not to be affected. A few years ago after chemo, someone said she looked like Aunt Jemima. Recently, someone made a remark that some folks have a hard time looking at people with cancer. What does a man do when he sees someone's mouth open only to project buffalo chips?

I cannot dwell on someone else's complete lack of understanding, momentary or not, of what Dori is enduring. I cease to be amazed at the lack of sensitivity to her burden and how some people are unable to at least try to see things from her view before opening their mouths.

My remedy is, and always will be, hugs, encouragement and the truth for Dori. I've never been around a better and more courageous person. And that's no buffalo crap.

Thursday, September 16, 2010

What Will Be The Plan?

Dori is in the cancer infusion clinic, receiving platelets, which have dropped significantly after last week's chemo. Earlier this morning, we visited with Dr. Jagasia to discuss how the plan is looking. The discussion was very informative and has us talking about the recent past and the future.

The doctors are basically thinking of a few options. Highest on Dr. Jagasia's list is doing a second transplant (stem cell this time, not bone marrow) with a preparatory infusion of thymoglobulin, a relatively new chemo drug they are beginning to administer more effectively. A donor lymphocyte infusion is also being seriously discussed. Dr. Jagasia said he will recommend using Dori's original donor, Hans, who is apparently available for the transplant or DLI. Other team doctors are currently advocating leaving things as they are, while maybe one cites data that this disease known as AML is "incurable" (pause for "hogwash").

Dr. Jagasia said Dori is clearly in "unchartered territory." He said Vanderbilt has not done a second transplant here on an AML patient like Dori and little scientific data is available to give them guidance to a certain best course. Dori's complex cytogenetics also has them a bit befuddled, but Dr. Jagasia, who seems clearly inspired by Dori, said he is hopeful. Her relapse occurred well after the first transplant, and her functions (liver, heart, etc.) remain good.

He mentioned we could do a second transplant in Houston (MD Anderson) or Seattle (Fred Hutchinson Cancer Research Center). We aren't leaning that way; we like the team at Vanderbilt, and it's close to home. We likely will ask Dr. Jagasia to present Dori's case not only to his team here at Vanderbilt, which he will do again next week, but also to the team at "the Hutch." Then we'll follow the chosen plan here at Vanderbilt. Dori is probably seven to eight weeks out from a transplant or the DLI.

Dori commented she knows she's not going to live to 80 and she might just resolve to getting another few years, to which Dr. Jagasia said, "I don't believe that's necessarily true. There is hope." Amen, Dr. J.

We were surprised to learn Dori's graft versus host disease (GVHD) in July was Stage 3 and 4. Stage 1 and 2 are easily manageable, while 3 and 4 are life threatening. They don't want 3 and 4 again, and neither do we. Purple, hot, peeling skin isn't welcome again on my girl. The main risks going forward are too much GVHD and infections.

I asked Dori today if she believes in miracles. She said yes, she had been before, but with a grain of salt. Today, she said she absolutely believes in them. Listening to today's clinical view, I realized how fortunate Dori is to be here right here right now. I asked, "Why is it that we have 'Internet friends' like PJ, Ann, Ronni, Lea and others ... people we've never met who are incredible survivors against the odds, just like you?" How do you explain all this?

There are no easy answers. For doctors, for my family, for anyone. The doctors can only do the best with what they know. Our family can only face this with dignity and honesty, as Dori continues to do. Our extensive support group can only pray for the outcome we all want.

Wednesday, September 15, 2010

Bouncing Back

Kathryn and Will decided they wanted to run at a high school's open invitational meet for 5th through 8th graders. This evening, fifth-grader Will entered to run 800 meters, while seventh grader Kathryn signed up for 1600. My Mom and sister Anne joined us. Only one other boy showed for Will's race, while Kathryn ran against eight other girls.

Will ran well, finishing a few seconds ahead of his companion, officially at 2:59. His McMillan Running calculator projects his mile at 6:37. He enjoys running and did very well for his first race on a track!

Kathryn had a rough cross country race Sunday, but showed significant maturity that evening when she told me, "I need to prepare better before the next race. No more sleepovers." I was impressed. She prepared well today and arrived determined this evening.

From the gun, her teammate Kennedy set a blistering pace, running the first 400 in 1:23. Wow. Kathryn hung around, clocking a 1:30. Too fast, I thought. I turned to Kennedy's Mom and said, "This can't last." It didn't, as they both settled in to a more reasonable pace. Kennedy stayed smooth, as Kathryn tracked her, with a girl from another school a few seconds behind.

The girls' form began to deteriorate, but you could see them fight through it. Kathryn finished her third lap with a red face, but with an expression that said, "Last Sunday wasn't me. This is me." She started to close on her friend, but Kennedy found a gear. Both bested the winning time in last year's inaugural meet, Kennedy at 6:56 and Kathryn at 7:03. Kathryn's friend Haile finished fourth. Kathryn's mile equivalent projects to a 7:15.

On the way home, the kids provided race recounts. I dropped the term "negative splits" as a teaching moment, and both kids asked, "What's that?" That's how you lower your times, as I shared some hard lessons I'd learned in a few races.

Earlier in the evening, Dori was a bit down she couldn't attend, since crowd avoidance is on her daily To Do List with her low blood counts. I called her from the track, and also filmed parts of the race and took photos. We watched them tonight, with smiles, attaboys and attagirls.

Tomorrow, Dori and I head to clinic for her check-up and talk with the doctors. Resilience runs in this family!

Sunday, September 12, 2010

Such Language

Last night, Will, his godfather Al and I settled in to our seats to watch Vanderbilt play LSU. Vanderbilt laid an egg, but it wasn't their inept offensive play that kept us from enjoying the game. It was the people around us, fans from both sides.

I've been attending Vanderbilt games a long time and never heard so many foul mouths in my life, not in college, the Navy or anywhere else. A group of six Vandy fans acted like orcs. Three were teens, two girls and one boy, who talked just like their obnoxious father, who threatened to fight a group of LSU fans a few rows behind them. Will and I moved down a row, but you could still hear the gutter talk. To my right, other fans also weren't saying nice things about people's mothers. A few LSU fans, young girls around 20 who probably had been drinking the entire day, barely made it to their seats. They had no idea where they were.

Midway through the second quarter, Will asked if we could leave at halftime. The thought of moving to other seats crossed my mind, but I said maybe. Minutes later, his request was more urgent. He was having an awful time. I thought about what he's going through. The evening was supposed to be about fun, a break. Instead, he was likely thinking what I was: "How could people act so hatefully and boorishly? It's a football game."

I looked at Al, and he nodded. Let's get out of here. This is impossible to enjoy.

Sorry to sound snobbish, but those people did little to honor the heroes of 9/11 with their behavior. It seems like more folks today are angrier and unhappier than 15 or certainly 30 years ago. Or maybe it's just where we're sitting!

Will and I rode 10 on the bike yesterday, and I enjoyed a 27-mile ride early this morning through suburbs, farmland and city parks. I counted eight serious hills with an ascend of 1,000 feet (according to I did see one road rager try to run five bikers off the road (he honked his horn and yelled at them). Maybe he sat behind me at the football game.

This afternoon at cross country, Will PR'd again, running a mile in 6:40. I love watching him and Kathryn run. Kathryn always seems to run her best times toward the end of the season, and she's probably not fully recovered from her hospital visit. I'm proud of both of them for being active and determined to do better, whether they've had a good day or not.

Speaking of good days, Dori seems to be having them. She's very tired from the chemo but still not feeling other side effects, which is great. I'm feeling better, now that the stay at Vanderbilt is behind us.

We move on.

Monday, September 6, 2010

Church Is Good

I've been a little down and frustrated lately. The cancer thing can wear on you. I hadn't been to church in weeks, which is not good. But I was scheduled to read last night, so we all went, including Dori. It was her first time in church since early summer.

Mass was wonderful. For me, it was the readings, especially Wisdom 9:13-18b and Luke 14:25-33; for Dori, it was being there and two favorite communion songs, You Are Mine and On Eagle's Wings.

I needed comfort and instruction, and found some at Mass. In his homily, Deacon Jim explained the Luke reading so well, breaking down the hyperbole Jesus used in telling followers they must "hate" their families and shun their possessions so as not let them come between them and God. We'd never grasped that before. My reading from the Book of Wisdom is self-explanatory: Who can conceive what the Lord intends? Not here, not now. We must trust, hard as it can be.

The bike continues to be my friend. I rode 27 Saturday morning, eight with Will and three with Kathryn yesterday, and 22 this morning. Sixty miles of our hilly, beautiful town in perfect weather. My friend Al and I tailgated Saturday with my boss and his wife and then watched Vanderbilt lose a squeaker 23-21 to Northwestern. Our entire family loves college football, and here's just one reason why. As big and hyped as the sport has become, there is joy in watching teams play and laugh like this SEC group. Hilarious!

Dori reenters Vanderbilt tomorrow afternoon. She will receive her PICC line, and then it's back to 11 North. We are praying for a no-frills stay, with two days of consolidation chemo and shortly thereafter a return home for more recovery.