Friday, July 30, 2010

When It's Hot

Some people love the summer. Not me.

When it's scorching hot - 90s and heat indices around 105 - it's hard to enjoy yourself. During normal summers, I run early in the morning, and even then, running isn't as enjoyable as in the fall or winter.

This, of course, hasn't been a normal summer, like 2007 when Dori was diagnosed with AML and we had a record heat wave. I run when I can, and sometimes it's in the heat of the day. This week, I've run twice - 4.5 miles in the late afternoon with Will, who followed me on his new mountain bike and 4 miles at midday in Percy Warner Park. The frozen water I carried melted completely.

So how and why do I do this? Because the alternative is worse. It relieves stress and keeps me going. It helps me be a better caregiver, father and part-time pseudo-Mom. It also enables me to relate to Dori, in a strange way. She's been pushing through the dark fog and pain from chemo, which seems never-ending. That's how I look at this heat wave - seemingly never-ending. But it will end, despite the fact the 10-day forecast wants me to think otherwise.

Sometime in early September, the morning temperature will be 65 instead of 75. A spell later, a dry cold front with soothing winds will rush through the Tennessee Valley, stirring the leaves and signaling change. Likewise, soon Dori's chemo fog will lift, her blood counts will rise and her strength will rebound.

This morning, her doctor said she has a small amount of neutrophils, a sign her body is preparing to defend itself on its own. A nagging rash around the eye is on the mend. Her itching is almost gone and rash is down. Yesterday, she rode the bike for 20 minutes and walked a quarter mile, her first exercise in a week.

I continue to remind Dori it's the trend, not the moment, that matters, and we're both going to enjoy better times. Like Lance's quote, if you don't have hope then what other choice is there?

Thursday, July 29, 2010

Hall Quotes

Encased on the 11th floor at Vanderbilt Medical Center, where Dori is being treated, is a collage of inspirational quotes. Here are two favorites:

“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them.
When you think about it, what other choice is there but to hope?
We have two options, medically and emotionally: give up, or Fight Like Hell.”

Lance Armstrong

“Ability is what you're capable of doing.
Motivation determines what you do.
Attitude determines how well you do it.”

Lou Holtz

Monday, July 26, 2010

Time for Hans and Persistent Prayer

We learned Friday Dori's leukemia was not in remission. To say the least, this was difficult to hear, but the next 48 hours wouldn't be any easier. Dori's blood counts hit their lows, her full-body rash and right eye infection intensified, her blood pressure went very low and her fever rollercoaster went on wild swings.

Dori fell at 3 a.m. Saturday morning, but luck was with her ... somehow, she did not hit her head. During her transplant in 2007, Dori fell in the shower one morning when her blood pressure plummetted under the warm water. It was a nasty fall, one I'll never forget. We posted a 24-hour watch then, and we had posted watch when she fell early Saturday.

I knew things weren't right early Saturday evening. Dori had wondered when the intestinal issues might surface, and they did late Saturday. I stayed awake, knowing bathroom trips would be frequent and Dori would need a spotter. At 10:30 Saturday night, she completely blacked out but I was there. I caught her, and the night nurse was luckily right there too in a flash. It was 20 minutes of chaos, but we got through. I cannot tell you how awesome the staff was that night.

Late Sunday, Dori seemed to be recovering. Indeed, her counts were up this morning and her vitality, though low, is trending the right way. She is constantly itching and uncomfortable, and pain comes in waves. She is bearing a cross with uncommon grace and determination. Dori's sister Kathy and I are constant supporters, sharing whatever wisdom we can muster, reading her e-mails and CaringBridge posts ... just whatever we can do. With my sister Anne, the three of us will be on day and night watch for the foreseeable future.

We need Hans, Dori's unknown donor, in a big way. We hope he's getting busy, stirring up a graft vs. leukemia effect. Right now, more chemo is not in the cards.

Dori's leukemia is called "persistent" by her doctors, but so are the prayers around Nashville, the Southeast and our country. The outpouring of love and prayer has been phenomenal, bolstering Dori, our family and dear friends. Blessings to you all. Go, Hans, go.

Wednesday, July 21, 2010

Now, the Waiting

Dori's biopsy is done. This one was rougher than normal because they didn't hit paydirt at first and had to go in twice. Dori endured a lot of pain and discomfort. The last day has been rough for my bride. We'll know results perhaps Friday afternoon or Monday, we're told.

Big picture, which I keep telling Dori and myself, is she is doing well. Her fever is gone and her PICC line looks great. She is eating well and staying unbelievably active through a haze of drugs and significant fatigue. She rode the bike less than two hours after they pulled marrow for her tailbone. How many guys can do that?

No caregiver likes watching this, honestly. Dori's right eye is swollen, like Rocky's. Her hair is falling out, which no woman enjoys. She has a rash on her back and stomach from an adverse drug reaction. She is wobbly from all the drugs and struggles to remember things. You get the picture. Chemo and cancer suck turnip roots.

I have relied on my son's advice ... There's no reason for anger because you can't blame anyone for this. My dream a few weeks ago, in which Chuck Hendry told me to be calm and take care of Dori, helps. Prayers for peace help. Extinguishers keep the flames at bay.

I'm blessed to have an inner circle that keeps things going for Dori, the kids and me. We'll wait for the biopsy results and get ready for the next round. Negative, clean, remission ... that would be the preference!

Here's a photo of the kids, with our dog Pepper and our nanny's puppy Joey. We're so proud of Kathryn and Will. Fittingly, when Dori powers up her new iPad, they are there to provide a motivating greeting.

Monday, July 19, 2010

Reporting from 11 North

Tonight, I'm spending the night with Dori. She's been alone only twice (last weekend) the last 10 nights or so. Her sister Kathy was here five nights, then her Dad for a night, then me Friday night.

Dori appreciates the company because we know when to chatter and when to zip it. Close companionship isn't always about conversation. Today has been a day for chatter. Dori isn't happy she ran a 100.6 fever, and her right eye is bothering her. I'm Captain of Team Vent, and know when and how to get her to tug the steam whistle. "You're right ... It sucks. Get it out and let's not gravitate toward any pity." Unfortunately, we hold advanced degrees in Engine Cooling.

Dori hasn't been in a complain mode the last three years, or last three weeks for that matter. Today, she's just really weary of hospital crap, even though the staff continues to be helpful. She wants to be carting around our children in a van, asking about their day. Can't say I blame the thoughts. That's the goal, actually. Normalcy.

Early Saturday, I left the hospital to run with some Team In Training buddies ... Jim, Heather, Jack and others. After more than 3.5 miles, we broke off in separate groups. I ran the last half of 7.25 miles with Heather, whose mother is a multiple myeloma survivor. I enjoyed the run, my longest since April. Jim and the others finished minutes later, running between 8 and 10.

I ran another three this morning with Pepper, our great dog with an indomitable spirit. Yesterday afternoon before church, Will and I hopped on the bikes. Will loves his new mountain bike, which we purchased last week. Kathryn finally succeeded in lobbying for a cell phone. The timing for the bike and phone ... well, you know. Have at it, kids. Pedal and dial away with your friends.

I'm also reading a fair amount at night, and my Mom put out a nice spread for dinner Saturday night for Kathryn, my brother-in-law Stephen and me. I'm working full days and near full days. Do you see a pattern? Staying busy! The alternative is lousy.

It's been 19 days since Dori called me with her bad news. It seems like months ago. I remember the summer of 2007, when the concept of time disappeared. This summer is the same. Days seem shorter, because we're so busy, but weeks seem like months.

Wednesday, July 14, 2010

Taking It On

I'm in a much better place now than last week. I couldn't smile or laugh much. Didn't want to even try.

But time, friends and perspective tend to heal the mind. The shock is gone, and the routine is here. Dori is doing well, and that's a huge help. She's asking about everyone, exercising and eating very well. Despite her fatigue, she's engaged. Her sister Kathy's presence has been a huge help.

I've picked up my running and reading. I ran 15 miles last week, and completed a six-miler Sunday in 92 degrees in Percy Warner Park (the hills were tough but the shade helped). I'm on my fourth book since vacation ended a few weeks ago, back when life was calm. I'm planning to run another marathon in December, and have alerted some running friends to let me know about early morning runs.

Dori insisted the kids go to Gilda's Club Monday night. She brought up the topic at least five times, and so, we went to Gilda's. The kids enjoyed it. I did, too, though I felt zapped when I got home. I won't mention names, but the group was amazingly brave and the discussion was no-holds barred. I listened to a cancer survivor who's getting divorced, a breast cancer survivor, a man whose wonderful wife recently passed away, a husband who is battling melanoma and his wife, a woman whose husband recently passed from colorectal cancer, the husband of a surviving wife who's battled a rare cancer, a woman whose young son's leukemia is in remission, a lymphoma survivor and his wife, and a dear petite lady who has been through so much chemo and radiation but has no fear and her husband. Her courage and talk of her walk with our Lord inspired me.

Gilda's Club, in a nutshell, reminds us we're not alone. I had upbringing that sent mixed messages on handling trouble. Camp One said problems are not to be discussed (keep your privacy, avoid any potential embarrassment or weakness exposure, etc.), while Camp Two said put things on the table.

Obviously, I picked the latter, and thank God I did, given what's been going on in my life. I'm not into the touchy feely so much, though I can go there. I'm more into being frank, candid, honest and real.

And that's where I've been the last week - getting back into the routine I didn't want and being honest with myself and others. This whole thing sucks, but I'm working to get back into shape and face it.

Friday, July 9, 2010

Sources of Strength

I spent much of yesterday praying for peace for Dori. It was a day I was glad to leave behind because I knew today would be better. Today was much better.

Dori was strong to readmit herself yesterday, but the flashbacks of 2007 proved to be intense. How couldn't they be? Checking in to 11 North at Vanderbilt, where she'll likely be for at least the next four weeks, was equivalent to taking repeated gut punches. I held her in my arms at one point, and all I could say was, "Let it out, let it out. It's going to be OK." It was brutal and exhausting, mostly for Dori.

The staff of 11 North is awesome, just like they were a few years ago. About half the team is still there. One nurse said to Dori, "You're the last person I wanted to see up here," then hugged her. It's hard to be back, but we're in good hands.

When I visited this morning, Dori looked great and seemed to be moving ahead. My Mom and sister joined us, and some laughter picked everyone up. Several visitors said hello throughout the day. Dori can accept guests easily now, because the chemo hasn't really knocked her down yet.

The days ahead will be challenging. The chemo, which started hours after she checked in, will run for five days, or four if her counts plummet. She'll be done Monday night or Tuesday night, then getting a bone marrow biopsy on Day 14. Remission, negative and clean ... all words we want to hear in late July.

This afternoon, the kids visited. They are in great spirits, actually. Kathryn talked about Mom on the way home, and Will and I talked tonight. He was afraid three years ago, but has a sense of optimism and calm that is impressive.

He's come a long way and said something I won't soon forget: "I'm not angry because I know this isn't anyone's fault." Sad, yes, but not angry. Children are a blessing in many ways, but I appreciate their resilience, intelligence and positive growth. It's helping me.

So are your prayers. Many friends, new and old, are showering us with love and holding us up. It helps more than you know to hear the choir.

Thursday, July 8, 2010

Small Steps

The last week was a blur, an awful blur. I haven't felt like talking much or writing on this blog, which was a key place for me last time Dori faced blood cancer.

I'm almost forcing myself to write because I know it's good for me, which helps me give strong day-to-day support to Dori and my family. In tough times, this blog, along with running, prayer and friends, has bolstered me, helping me to stay positive and shun dark thoughts.

Kathryn and Will are in a much different place than three years ago. They're upset and disappointed, but handling it better than a few years ago, older and wiser. They seem to sense their approach has an impact on their Mom's state of mind, and their own. They are more than children to us now; they are emerging as part of our support structure. We love them more than words allow.

Will is talking about his Mom's cancer, a positive sign. Last time, he said very little. This past week, he asked good questions and vented a time or two. He is maturing into a young man before our eyes and has a terrific sense of humor. The other day in the car with Dori, I said, "Will, you're a gifted athlete, artist and musician, smart and funny, and you have lots of friends. What are you not good at?" Without hesitation, our vegetable-shunning son quipped, "Eating!"

Importantly, he has a best buddy and several good friends. His self-esteem is growing. Kathryn is 12 going on 22. She also has a good group of friends, girls and boys, and a best friend. She has surrounded herself with grounded kids, a source of pride for us. She has no problem venting or inquiring, a family tradition.

Dori is doing well. I know what makes her tick, and she knows how to monitor me. Situations like this, as many of you know, elevate emotions, fear and anxiety to unwanted levels. A week ago, we were both in shock, which was heightened by our friend Chuck Hendry's death. Deflation then replaced shock. Now, it's game on. Going to Vanderbilt yesterday was actually a relief for me ... I want to get on with it, not stew or wonder. So does Dori, hence her decision to check in to Vanderbilt today rather than wait.

Here's a great photo of Dori, which I took yesterday. I see hope in her smile, and as always, love.

The calls, letters and e-mails from our friends are greatly appreciated. We'll keep you posted on CaringBridge, which you can find linked to the left. And I'll be back here for reasons already discussed.

Saturday, July 3, 2010


I didn’t want to kick-start this blog again. Ever.

But fate has cast her spell, and we’re back at war. Dori has relapsed. The leukemia is back.

The whole week has been terrible. On Monday, Chuck Hendry, Dori’s dear friend from 11 North at Vanderbilt, passed away after courageously battling AML. The beast didn’t win. Chuck did.

Cancer thinks it wins, but it’s wrong. Chuck faced his mortality with grace. His dignity and love for his family, his poise and fight, and his love for God in the face of being served up the biggest s**t sandwich of all were exemplary. His funeral was both hard and uplifting. We love him and will miss him, and we continue to pray for his wonderful family.

Dori called me Thursday at work from Vanderbilt with the words, “I don’t want to alarm you. My counts have dropped, and they’re concerned.” A few days earlier, Dori was running in 95 degree weather in South Carolina on vacation, biking with us and playing tennis. Run that by me again, sweetheart?

She decided she had to know, so she asked for a bone marrow biopsy. An hour later, Round 2 was no better. The blood work looks “suspicious,” we were told. That night, we were told they were almost sure it was back. Friday afternoon, they said they were sure. Relapse.

The exhausting week has been so hard that I’m looking for a descriptive word besides “surreal.” It won’t seem to do in this circumstance, when things had finally returned to normal in our lives.

We don’t know what’s next. We’ll enjoy the long weekend and regroup. We’ll be talking to the doctors next week when they’ve had time to analyze and suggest options.

Unfortunately, I’ll be in touch.