Chicago, Day 3

Sunday morning we headed to the John Hancock Center, which is the second tallest building in Chicago (the Sears Tower is few stories taller) and arguably offers the best view in the city. The observation deck is on the 94th floor, and the seven of us spent a lot of time walking around, admiring the view and beautiful architecture.

As you'll recall from the Day 2 recap, Steve was very active on Saturday. All that activity caught up with him early Sunday, and he was too exhausted to continue. So he and Betty took a cab back to the hotel to rest, and Jim, Jim and I took Cooper and Katie to Millennium Park, a huge public space bordered on the west by Michigan Avenue.

We spent a lot of time in and around "Cloud Gate" (a.k.a. the Bean), a stainless steel sculpture that creates fascinating mirror images. We also loved the giant Crown Fountain -- a reflecting pool is bookended by two 50-foot-tall towers with digital images of faces that change. The image of a child's face appears still until he winks at you. And then he puckers and water shoots out of his mouth! If it had been 20 degrees warmer, we would have let the kids frolic in the water. I imagine it's a popular spot in summer.

Nearby is the Art Institute's sculpture garden featuring some of our favorite artists -- Moore and Calder. Cooper spied the red Calder from far away and said it looked like a dragon. Katie thought it looked like an airplane or butterfly. Its name is "Flying Dragon."

After plenty of outdoor time, the Jims took Katie and Cooper back to the hotel, and I headed to Due to pick up some deep-dish pizza. (Due is the second installation of Uno's.) We ate that in the room and then got ready for Wicked.

Uncle Jim left for the airport, and Grandma and Papa were kind enough to stay with Katie, who slept almost the entire time we were gone. At home she relies on a daily nap and about 11 hours of sleep each night. She was running a huge sleep deficit by Sunday.

I wish I had been allowed to take photos during the performance, just to have images of Cooper's expressions during certain scenes. Steve and I saw Wicked a year ago at Fair Park in Dallas. Ever since, Cooper and Katie have loved to hear about the story and listen to the soundtrack. For Christmas Cooper received a book about the Broadway production (he's much too young to read or be exposed to the novel). So, he was really ready to experience the actual production. He was thrilled (and sometimes understandably scared) to see the huge dragon above the stage, Galinda and Elphaba meeting for the first time, the Wizard of Oz's facade, the monkeys growing wings, Elphaba taking flight at the end of the first act. It was just magical.

Katie was disappointed that she wasn't invited, but 2-year-olds aren't allowed in the theater, and it would have been way too scary for her, and I don't think she could have sat still through the show. I have promised that she can go when she's 6, so let's hope it's still playing somewhere or touring!

Cooper requested to eat in the hotel room again, so he and Steve stayed in, and Katie, Betty, Jim and I ventured out. We ate dinner at Rosebud on Rush and brought home plenty of food to share.

For more photos from Day 3, click here.

Coming next: Our last few hours in Chicago

Health update

Steve's blood work from yesterday showed that his counts are in good ranges, so he was clear to start his third round of chemotherapy last night. The night went well, and he's now getting ready to go to work.

He's continuing to take 6 mg of Decadron. His symptoms improved on that dosage. His voice is still weakening as the day continues, but his left side is more functional.

This is the final week of the first round of Accutane. He'll take next week off and start 21 days again. His lips have been dry; he's using Vaseline Lip Therapy. His eyes have been dry; he's using artificial tears. His skin hasn't been affected too badly, thanks in part to the soothing soaps and lotions from friends.

Chicago, Day 2

Our second day in the Windy City was long and filled with fun.

Steve, the kids and I returned to the West Egg for breakfast then took a cab to the Museum of Science and Industry. This is the kind of museum that you could spend three or four days exploring. We spent about five hours, which was almost too much for Katie and not enough for Cooper.

Jim, Betty and Jim met us at the museum not long after we arrived. I really appreciated having so many adults to keep track of the two youngest Damms. Steve was able to walk from exhibit to exhibit with us and participate when he felt strong enough or sit when he needed.

Katie loved the farming section, water space, circus area and transportation space. She lasted about two and a half hours before falling asleep in Grandma's arms.

Cooper loved all of it, especially the extensive submarine exhibit, the Swiss Jolly Ball (a giant pinball machine-like display), the toy-making factory and the water space.

We left the museum in the middle of a gentle rainstorm. After getting Cooper and Katie settled in for some quiet time, Steve and I ventured out again, for a quick trip to the Art Institute.

Steve and I love art, but we don't agree on favorite styles. He loves modern art. I love impressionism and post-impressionism. The Art Institute offers enough to satisfy us both. The collection includes some lovely Monet paintings that reminded us of our five-year anniversary trip to Europe.

We returned to our hotel, and while Steve rested, Jim, Betty and I took the kids to the hotel's indoor swimming pool. They were able to "get their wiggles out" before dinner.

The seven of us met at Brasserie Jo, a French-style restaurant in downtown Chicago. The noise level was high enough that no one was bothered by two children, and the staff was very accommodating. The food was perfect -- special but not too fancy. Our entrees included beef wellington, steamed mussels and red wine chicken coq au vin. Desserts included chocolate mousse, creme brulee and a cheese plate. Katie was adventurous enough to sample her daddy's blue cheese and discovered she doesn't like veined cheese.

After more than two hours, a little wine, a lot of food and great company, we headed back to our temporary home. Cooper got out of the cab and raced for the revolving door. Katie raced behind him. Only her fingers made it in the door, and then they were stuck! The doorman was quick to rush over, and together he and I pulled the door back and set her hands free. She was understandably scared but not injured, and we avoided revolving doors the rest of the trip.

For more photos from the day, click here.

Coming next: Day 3 report

Chicago, Day 1

Six of us left D/FW last Friday for Chicago -- Steve, Cooper, Katie, me and Jim and Betty. We were especially thankful that American Airlines had resumed regular service that week, as we were flying on an MD-80. Uncle Jim had flown in from Houston the night before and met us at O'Hare.

We split up after claiming our bags. Steve and his parents took a cab downtown, and the kids, Uncle Jim and I hopped on the train. The taxi beat us by about an hour (we had a transfer and a few blocks of walking), but Cooper and Katie loved the train experience. When we stepped out of the underground station and Cooper saw the city streets, he instantly brightened. "I love Chicago," he gushed. He has always loved big cities -- New York, Boston, San Francisco, Philadelphia, D.C. I expect, when given the chance, he'll eventually ditch suburban life.

We regrouped at the hotel (the Courtyard Marriott off Michigan Avenue, on Ontario Street), and then headed out for a late lunch. About a block away was the West Egg Cafe, which I had read about earlier. (For those readers who don't know me well, I'll tell you now -- I love planning a vacation almost as much as taking a vacation.)

The West Egg is where Katie discovered her signature Chicago meal -- strawberry banana pancakes. She ate them every day we were in the city!

Then we split up -- Betty and Steve returned to the hotel, and the rest of us took a cab to the Navy Pier. We spent about two hours at the Chicago Children's Museum, which is now definitely in our top 3 children's museums. (The other two are probably in Milwaukee and Philly, though the Lakeland, Fla., one is a contender, too.) The museum successfully appealed to both Katie's and Cooper's age group. They both loved the water room, which offered opportunities to build dams, operate locks, pump water, float boats, build pipes and more.

As the museum was closing, we left for the giant ferris wheel, which offers great views of Lake Michigan and the downtown skyline.

We returned to the hotel to rest. Jim, Betty and Jim went to see Wicked that night, and Steve, the kids and I walked a few blocks to dinner. We found the Mity Nice Grill, at the back of a fancy shopping mall, and settled in. We were all tired from the day, but Cooper seemed the most exhausted. He barely touched his meal and was falling asleep in the booth. Not even the prospect of dessert would rouse him, so we went straight back to the hotel and put the kids down for the night.

And then I had a minor breakdown. Normally when Steve and I travel to a city, he ventures out before our bedtime and comes back with a surprise dessert. Well, he can't do that now. He's not stable enough to walk alone in our quiet, familiar neighborhood, much less a relatively unknown, crowded city. And that's when I started to cry.

At home, we've adapted to our new living-with-cancer routine. And going out of town would be different, I knew, than any other time we'd been out of town together. But no amount of planning had prepared me for how sad I would feel at that moment when I realized that even minor details of our vacation rituals would change.

And then I felt selfish for feeling sorry for myself and for wanting "old Steve" back. I mean, honestly -- I don't have a tumor in my brain stem. I'm not the one who is confined to the room unless someone goes with me. I should be grateful (and I was, really, just not at that exact moment) that we were together as a family, that we were celebrating Steve's progress -- not greedy for what life used to be like. And all those thoughts made me feel worse. And it was my birthday. (Natalie, a friend whose daughter is undergoing chemotherapy for optic gliomas, calls it a "how the heck did we get here" moment.)

I pulled myself together, left the hotel and wandered the city streets in search of dessert. I eventually found a wonderful, individually sized cherry pie with white chocolate mousse and ate it in our room. (Steve couldn't eat anything that late, as he was close to taking his chemotherapy. He has to wait two hours after eating before he can take the anti-nausea medicine and another 30 minutes before the chemo.)

Steve and I talked about it all, and we agreed that we just hate the Damm Spot. I am especially thankful that we can talk with each other about our moments of melancholy and that we support each other through these minor crises and much larger ones.

For more photos from our first day, click here.

Coming next: Day 2 report (and no crying, at least by me!)

Wobbly

Steve's left side is weakening again. He's been on 4 mg of Decadron for a while. Dr. M told us we could regulate the steroid as needed. The hope was that he would drop down, but we've decided he needs to increase instead. He took 5 mg yesterday. Today's unsteadiness (and fatigue) was worse than yesterday, so he took 6 mg today. We hope he can hold steady at 6 throughout the weekend and drop down again.

He worked from home today -- the sofa was his "office." Isn't technology great? When his work day was over, we walked across the street for "happy hour" -- an impromptu gathering of neighbors on the Dube driveway.

Yesterday we met with Dr. A, the radiation oncologist at UT-SW. We've grown accustomed to his unusual bedside manner and look forward to his appointments. Of the three doctors we've seen who've read the recent MRI images, he's the least cheerful about the results. But that's expected. There's a tension between radiation oncology and oncology. Radiation folks want to wait three months post-treatment for a scan. Oncology wants a scan sooner. So did we! Dr. A will be more confident in a prognosis based on the next MRI, scheduled for late May.

Cooper's version

The day we returned from Chicago, Cooper dictated a letter to his teacher, Mrs. Brinlee, describing some of the highlights of our vacation:

April 21, 2008

Dear Mrs. Brinlee,

I just went to Chicago.

I saw “Wicked.” It was fantastic! It was so fantastic because of how they acted. I liked the way they made the monkeys fly and how the actors talked, sang and danced. “Wicked” is about a girl who is green, and people don’t really like her.

Another thing I did in Chicago was go to the top of the John Hancock building. The John Hancock building was so fun because you can see outside in a telescope. There are 96 floors. I could see Michigan, Illinois, Indiana and Wisconsin all at the same time.

We went to the Museum of Science and Industry and the Children’s Museum. My favorite part of the science museum was seeing the U-505. The U-505 is a submarine from the Navy. What I liked about the Children’s Museum was using my imagination to build a big skyscraper.

And I’m very, very glad to be home.

Sincerely,

Cooper Damm

Vacation photos

Here are some photos from our Chicago trip; actual narrative coming soon!

From the 94th floor of the John Hancock Center

Cooper and Uncle Jim at our celebratory dinner Saturday night

On the way into Wicked, which Cooper described as "fantastic"

Riding the ferris wheel at Navy Pier

We're home!

We landed at D/FW about 3 p.m. today. Chicago was great. We're all tired. I'll post more later.

(Steve completed his second round of chemotherapy last night. No nausea all week. Yay!)

Wild West

In August last year, Steve was one of a dozen adventurous runners who banded together to run in the Wild West Relay. They traveled from Fort Collins, Colo., to Springboat Springs, Colo. Together they ran 195 miles, taking turns while two others drove vans along the course.

Steve joined the team because Will was running. (Will and Steve went to high school together. Will and I went to college together. Will introduced us in spring 1992. As Steve likes to joke, it's Will's fault that we're together.) Will was running because his cousin Blair and Blair's wife, Kat, were putting the team together.

So Steve trained last summer. He stepped up his running routine. And when Layne's cousin from Colorado warned us of altitude sickness, Steve even cut out caffeine altogether to increase his chances of faring well. (After hearing Layne's cousin's stories, I stepped up my worrying routine.)

The team did well. They finished, which I think is quite a feat, and they bonded over movies, bad food and other experiences that I don't think they've fully shared with anyone who wasn't in one of those two vans.

Will stopped by this week with a thoughtful gift from the team -- a framed and matted photo of the runners (minus one) and a generous gift card to Sprouts, where we buy all kinds of cancer-fighting juices, teas and nutrients, plus a check for other expenses.

Looking at that photo stirs a lot of emotions. It's a stark reminder of how quickly life can change, how you can be in the best shape of your life and yet have no idea what your body has in store for you. We leave early tomorrow for Chicago. We're going to celebrate Steve's progress so far and create all kinds of good memories.

(Pardon the bad reproduction -- I just took a photo of the photo)

Smooth night

Steve began his second round of chemotherapy last night. He slept well and experienced no nausea, even on the doubled dose.

Go, Todd, go!

One of Uncle Jim's friends, Todd O'Neal, is participating in the Ironman Triathlon in Tempe, Ariz., on Sunday and is running on behalf of Steve! He will swim for 2.4 miles, bike for 112 biles and run for 26.2 miles. His goal is to finish in under 12 hours. Good luck, Todd!

A more optimistic perspective

Today was Steve's follow-up visit at UT-SW. He had another MRI, more blood drawn (it took multiple sticks to get a good sample -- his veins are usually difficult but especially so now after so many recent sticks and cancer-related treatment) and a lengthy visit with Dr. M, his Dallas neuro-oncologist.

Dr. C in Houston was cautiously optimistic, which matches his general demeanor. Dr. M was much more enthusiastic, which also matches her personality and approach. She believes that the tumor may be dying altogether, that the image we see on the scan may be dying cancer cells. That, of course, is over-the-top, unexpected great news -- if it's true. We are slightly puzzled, though, about what to do with her reading. It's much more optimistic than Dr. C's analysis, which indicated cell death in the middle of the tumor and the remote possibility of the tumor shrinking over time.

One reason we are letting M.D. Anderson direct care is because of our comfort level with their aggressive approach. Their doctors seem more proactive from the outset. For instance, adding Accutane to the Temodar so early in treatment isn't routinely prescribed at UT-SW. Dr. M seemed surprised that Dr. C recommended the double dose of Temodar and the seven days on, seven days off approach and said that that was more aggressive than she would have prescribed.

All of that is background to explain why we're having trouble reconciling Dr. M's reading with Dr. C's reading. We trust Dr. C's plan of action, therefore we tend to trust his reading. But Dr. M's analysis is better news, and who doesn't want to latch onto and celebrate that? As we're learning throughout this process, there is seldom a definite answer to any one question. We both have faith, though, that this journey has a purpose.

As Steve has stepped down on the Decadron the past few days (down to 2 mg), his gait, left-side funtion and voice have suffered once again. He's returning to 4 mg today and will stick with that for a week, then drop to 3 mg and hold there for at least a couple of weeks. As the brain is healing, Dr. M explained, it's dealing with a lot of extra debris that continues to cause swelling-related symptoms. That could take months to resolve, so Steve may continue his love-hate relationship with the drug that allows him to function but also weakens his muscles and adds some extra padding to his face, neck and belly.

He hasn't taken Tylenol since Friday! The Diamox, which is supposed to reduce the production of spinal column fluid and the pain in the back of his head, seems to be working. His head pain is at a 1-2 on a scale of 1 to 10, which he considers manageable.

Our awesome health insurance approved Provigil (the energy booster) right away, so we paid $50 for a month's supply. We hope that good luck continues next month. He's been taking it since Tuesday and has noticed a slight improvement in his fatigue level. He's confident that will continue to improve.

Steve will begin taking the next round of Temodar (with all its Dr. C-prescribed additions) and the first round of Accutane (five times the dose normally prescribed for acne) on Monday. Once again, our amazing support group has come through, this time with all kinds of suggestions on combating dry skin related to Accutane.

Recap:

• Dr. M believes the whole tumor may be dying.
• We love that news and yet struggle to reconcile her analysis with Dr. C's.
• Steve's swelling-related symptoms are back, so he's increasing the Decadron again -- 4 mg daily.
• Temodar and Accutane (plus some other drugs) begin their work on Monday.

A million things that you and I can do

"There is hope! Finally, hope!

And no, this isn't over

No, we aren't through!

No, there's still a million things that you and I can do!"

(Lyrics from the Broadway musical Parade)

Just after we took flight this afternoon to leave the Houston area, I pulled out my iPod Shuffle. The first song was "This Is Not Over Yet," from the Parade soundtrack. Steve and I saw the musical about seven years ago, when I was pregnant with Cooper. We both love the story and the music.

The main character sings the song when he learns that he has a reprieve from the death sentence for a crime he didn't commit. He and his wife are celebrating their extended time together.

I found special meaning in the song after our visit at M.D. Anderson today. The news was about as good as we could get.

The MRI scans show that the tumor is about the same size as in January. It didn't grow! And there is necrosis -- a cluster of dead cells -- in the middle of the tumor. Water has filled in that spot. (New brain cells won't grow there.) Dr. C says there's no way to know if it was the radiation therapy or chemotherapy or both that punched the hole through the tumor. In addition, there is less edema (swelling) around the tumor now as compared to January.

Dr. C was optimistic about the treatment so far and has recommended some additional tools to fight the Damm Spot. Dr. C's plan is designed to keep the tumor at its current size -- making it smaller would be an added bonus. (But don't let that stop you from praying that the tumor will altogether disappear!)

Chemotherapy
Next week Steve will again start taking Temodar, the oral chemotherapy. His dose will be twice as strong as his first round. He'll take it each night for seven days, then take seven days off. That cycle will continue for 12-18 months. With that, he'll continue to take Zofran to fight nausea, an anti-pneumonia drug and an anti-malaria drug, which may help deter cancer cell growth because of its antimutagenic properties.

Accutane
Steve will also start taking a high dose of Accutane, usually prescribed for acne. Accutane in high doses somehow turns off and on whole sets of genes in tumor cells and makes those cells behave more normally. It can be effective in working against cancer stem cells, which are resistant to chemotherapy and radiation, taking away their leadership qualities or "stemness," as Dr. C says.

We learned the possible risks of Accutane, including extremely dry skin, lips and mouth; pancreas and liver problems; increased triglycerides; and depression. Steve will need to moisturize from head to toe every day and stay covered in the sun. (If you suffer from dry skin and have a recommendation of a lotion or moisturizer that works for you, please let us know!) He'll also have his blood checked monthly for internal changes.

Diamox
Steve has been taking acetaminophen almost nonstop since November to address the headache at the back of his head. Dr. C suggested he try Diamox, which can reduce the production of spinal column fluid and may reduce some of the pressure he feels on the back of his head. If it works, Steve may be able to give the Tylenol a rest for a while.

Provigil
This drug is prescribed for patients with narcolepsy or sleep apnea. It could also help Steve fight the fatigue that he's been struggling with. This is an off-label use that insurance companies aren't willing to finance; the drug costs $360 for a month's supply. A 2006 study showed that it dramatically improved quality of life for brain cancer patients. We don't have high hopes that our insurance will cover an off-label use for quality of life purposes.

In addition to blood work and an MRI, Steve discussed with Dr. C and his nurse his current symptoms, including:
Double vision
His right eye doesn't function as it should, so he has double vision to the right and straight ahead. Dr. C is not hopeful that this will ever repair.

Left-side weakness
As Steve is again backing off the Decadron (down to 2 mg daily), he's noticing some left-side weakness again. It would be best if he's off the Decadron altogether, but he may need to stay on a low dose to retain functionality.

Taste changes
Sweets no longer taste good. This is probably because of the chemotherapy and/or radiation. I think it's his body's way of reminding him to avoid sugar -- tumors love sugar.

Swallowing
Steve still has no gag reflex, which keeps him at an increased risk of aspiration. He must continue to thicken liquids for safety.

We'll meet with Steve's neuro-oncologist in Dallas this week to review the M.D. Anderson plan and establish routines for checking blood counts and other vital signs. (Dr. M here frequently works with Dr. C there via phone and e-mail.) The next MRI will be in about eight weeks.

As we were landing in Addison this afternoon, at the end of a smooth flight, another special song started on my iPod. It was our first-dance song at our wedding, almost 14 years ago. (We will both tell you it's much too long to be a first-dance song!) It makes us both weepy and happy at that same time. It makes us want to dance in the kitchen or family room or wherever we are when we hear it. I shared my headphones with Steve, and we held hands until it was time to leave the plane.

"Was there life before this love

Was there love before this girl I can see

Was there ever love for her before me"

...

You can count on me to stand and say

'Was there ever life before this wonderful day?' "

(from Pete Townshend's "Was There Life")

Quickly

We're headed back to the Sugar Land airport.


Dr. C was guardedly pleased with the damage done by the chemo and radiation. The Damm Spot is about the same size as in January, which is good news if you consider it could have grown. Even better is the hole in the middle of the tumor, now filled in with water instead of cancerous cells.

Steve is surprised by the news, as he was braced for the worst. His spirits are good.

I'll update more when we get home. Thanks for checking on Steve!

Updates to come

Good morning! We arrived safely in Sugar Land yesterday afternoon. Sally gracefully steered us through windy conditions. She said it was one of the bumpiest flights in her flying history. It was definitely the bumpiest flight in my history! My stomach recovered a few hours later. Steve wasn't phased. He held my hand for more than an hour and constantly reassured me that we'd be OK.

Jim picked us up, checked us in to the M.D. Anderson hotel and took us to the movies and dinner. We also stopped at the House of Pies -- a Houston institution devoted to 40 kinds of pie! A tour bus of sweet older ladies (we think they were members of the Red Hat Society) arrived just moments before us, so we had at least half an hour to choose a flavor (Washington cherry for Steve, French silk for me, strawberry rhubarb for Jim).

We'll walk over to the clinic for Steve's first appointment soon and update later this afternoon, after we meet with Steve's oncologist.

Headed to Houston

Sally will fly Steve and me to Houston early Thursday afternoon. His appointments are at 10 a.m., 11 a.m. and 1 p.m. Friday. At the 1 o'clock appointment, we'll learn the results of the MRI and talk about next steps with the oncologist. We plan on flying back to Dallas Friday afternoon.

Aunt Ami has been here all week, helping me with projects and everyday life around the house. Her timing was perfect -- both Cooper and Katie have strep throat, and we definitely needed an extra mom to help with doctor appointments, pharmacy visits, cuddling, child-entertaining. She'll stay here while Steve and I are gone.

We so appreciate all of your good wishes and prayers as we take these next steps in Steve's journey to healing. I want to share an excerpt from our dear friend Jackie's blog. She and Sydney (her daughter and our goddaughter) have lived in Shanghai since June 2007. They spent last weekend in Hangzhou, China, and visited Lingyin Temple (Temple of Soul's Retreat).

We also took a moment to burn incense and say a prayer as it was a Buddhist temple. Mine was for the speedy recovery of Sydney's Godfather, Steve, who we love and admire more and more everyday. There was also a room filled with dozens of statutes and in the middle were large statutes of Buddha. Sydney watched other people kneel on the yellow pillow in front of the large statutes and placed their head in their hands in prayer. Sydney insisted on getting out of her stroller and knelt down on the yellow pillow and said her own prayer. It was just so sweet.