Tuesday, September 30, 2008

Guest blogger Liz: See Spot Run

I just want to remind everyone that race day is fast approaching. I hope your training is going well!

It's not too late to join our team, "See Spot Run." I will also be putting together five-person relay teams, so if you are interested in being part of one and running anywhere from 4 to 6 miles, please let me know by Oct. 8. I hope to see a lot of you at the race!

Many signed up to run the full and half marathons, but even if running isn't your thing you can come out and cheer on the team. Join us in celebrating our dear friend Steve Damm and all that he and his family have gone through this year.

E-mail me at runforsteve@gmail.com.

-- Liz

Monday, September 29, 2008

Good lab results

Steve's lab results today looked good. Some counts are out of range, but nothing is at an alert level. This is excellent news after his increased dose of chemotherapy last week. Now his body has a week of rest from chemo, and he'll do it all again next week.

Wednesday, September 24, 2008

Changing prism

Steve outside the Aston Clinic, wearing protective glasses post-dilation

Yesterday was our monthly visit with Dr. M, Steve's opthamologist. It was the shortest visit so far -- we were in and out in 90 minutes.

Steve's vision has changed a bit, so the opthamology staff switched out the prism that snaps behind his glasses' right lens. The new prism has improved his ability to see out of his right eye. The image is slightly hazy but not near as blurry as it was before. He still has double vision if he doesn't look straight ahead, but prisms aren't going to fix that. We need the sixth cranial nerve to repair!

We asked about getting the prism ground into his lenses, which would reduce some distortion. That won't happen for a while, as they expect his vision will fluctuate often. We'll most likely return to the office every month to check his vision and switch out for a new prism if necessary.

Want to read some great news? Steve doesn't have a scheduled medical appointment until Oct. 22! That is the longest stretch without a doctor's visit since our adventure began last December. He will need to have blood drawn weekly to check counts, but he's able to get that done at his office.

The goal is keep him healthy. We don't want any surprise doctor appointments or emergency room visits.

Aunt Ami arrived from Austin today -- in time for me to get out of town. I'm joining Liz, Kris and Holly for a short getaway to Montana and Banff. I have mixed feelings leaving. Steve and I haven't been separated for any length of time for more than a year, and I never like leaving Cooper and Katie. I won't deny, though, that I'm looking forward to a small break. The trip is made easier knowing that Steve and the children will be cared for so well by Ami, Jim & Betty and other friends who are pitching in. Thank you!

Monday, September 22, 2008

240 mg

Please join me in saying a quick prayer tonight that the new chemo dose of 240 mg will do its important work while also keeping Steve's blood counts in a healthy range.

Friday, September 19, 2008

Increasing chemotherapy

Back in early July, when Steve's immunity system crashed, he took a break from his chemotherapy regimen. When he started again, it was at a lower dose -- 200 mg, down from 300 mg. The risk of staying at the high dose was too great.

Today Dr. M decided to start the next cycle of chemo, which begins Monday, at 240 mg. Steve's labs have been consistently in range or close enough; no levels have been at an alert status. Dr. M thinks his body should be able to handle the increased dose. We pray she's right. We want to hit the tumor with as much poison as possible without compromising his daily health.

We also learned:
  • At least one doctor thinks Steve's double vision could go away. A neurology resident examined Steve before Dr. M and thinks the affected cranial nerve may take care of itself when the tumor moves out of the way. This is the only doctor who has even suggested his vision could come back -- we hope the minority rules!
  • The whole family needs flu shots. If any readers know a good way to make shots easier for 3- and 7-year-olds, please let us know.
  • Dr. M encourages Steve to increase his steroid dose if he starts feeling especially rundown or weak. He's been at 2 mg for weeks and has some stability issues that are magnified when he's tired.
  • His mouth and throat are free of thrush!
  • The next MRI is Oct. 22.

Visiting Dr. M always lifts our spirits. She showers Steve with praise, telling him what a great patient he is, how thrilled she is that he's working and not just sitting around the house, how she loves our optimism.

In the past few months we've realized how small and connected our world is. Today we received yet another reminder.

Dr. M's new medical assistant and I were chatting while Steve was in the lab. I learned that she was the medical assistant for Cooper's first pediatrician, Dr. P, while we were patients there. While the nurse worked for Dr. P, one of their 3-year-old patients was diagnosed with a glioblastoma (the same kind of tumor Steve has).

The nurse kept in touch with the parents. During one of their phone calls, she learned that they were desperately looking for a qualified nanny to help care for their sick daughter. The nurse talked it over with Dr. P, who agreed to let her quit that day. She started working for the family and took care of the little girl until she died later that year.

Some may think of the nurse's presence in Steve's life as a coincidence, but I take it as a small sign that he's being taken care of in a very special way.

Thursday, September 18, 2008

Silver linings

I've been writing a family column for a new Dallas Morning News product for a few weeks. Today I share with readers Steve's condition and some of the silver linings that we've discovered. I don't want it to become a cancer column, but I also can't ignore a major part of our lives.

You can read the column here.

(Thanks to Will for his excellent editing!)

Sunday, September 14, 2008

Little bits

Steve's condition
It feels strange if I don't update every few days, but there's really nothing new to report on Steve's health. He is noticeably weaker on his left side, but he can walk well enough on steady, predictable surfaces.

He's been on 2 mg of Decadron for a while. We see Dr. M on Friday, so she can advise if she's comfortable with the steroid dose. I certainly wouldn't vote for stepping down any more right now, but I am the overprotective wife.

Tonight he finishes another cycle of chemotherapy.

We received steady rain at our house yesterday, leftovers from Hurrican Ike. Uncle Jim (and his two cats) left his home in Galveston County on Thursday night, drove north and arrived in Dallas on Friday morning. He learned from a friend today that his house is mostly unscathed -- some roof damage and a collapsed fence.

Run for Steve
Steve loved reading everyone's suggestions for the running team name. (Are you training? There's still time!) After great deliberation, he selected See Spot Run. Thanks, John Wise!

If you plan on particpating in the Dallas White Rock Marathon on Steve's behalf and haven't let coordinator Liz Smith know, please do so soon. She's working with other volunteers on a logo design and shirt orders, so she'll need to know who's out there! You can e-mail her at runforsteve@gmail.com.

Friend and neighbor Allison and I are training to run the half on Dec. 14. Yesterday we ran the Heroes for Children 5K together. We'll keep adding a mile or so every week until we reach 13.1.

Liz, Katie, Tyra, Cooper and Allison, before the 5K

Tuesday, September 9, 2008

Unremarkable is good

Steve and I met with his pulmonologist this morning to review results from multiple tests. They all came back unremarkable -- they found nothing physiologically wrong with his lungs or heart. Wonderful news!

The sleep study indicated that he needs more sleep. He fell asleep before they even turned out the lights, which apparently is unusual. And he dreamed 28 percent of the time. Normal is 20-25 percent.

Dr. L recommends that Steve get at least seven and a half hours of sleep each night. He sleeps closer to six and a half hours now. He can't sleep any later than he does now, so he'll need to go to bed earlier and turn off the TV or close his book quicker.

Dr. L also wants Steve to continue his exercise routine. Yesterday he started walking on a treadmill. (Jim and Betty loaned us theirs. Uncle Jim and friendly neighbor Ron carried it into the house.) Compared with the exercise bike, there is more risk with the treadmill -- Steve's not exactly steady on his feet. He's also tried a water aerobics class for people with physical limitations at our city's athletic center.

The doctor couldn't give us an answer on Steve's low pulse oxygen level but also doesn't seem concerned about it being in the mid-90s, instead of at 100 percent.

Life at home has been messy and loud. Yesterday Katie closed the drain on her bathroom sink, turned on the water and left the room for about 20 minutes. When I discovered the incident, the bathroom, hallway, linen closet and part of her room were flooded. I used every towel in the house (plus a few borrowed from the Smith collection) to soak up the water. Liz helped me dissemble and move all the contents of Katie's bookshelves into the dining room so we could access the wet carpet. Layne rented and delivered a carpet-drying fan, which has been loudly blowing and drying for the past 24 hours.

Life is never dull!

Tuesday, September 2, 2008

Little update

Steve's sleep study didn't include a lot of sleep. We were thankful for the extra day off yesterday, which allowed him more time to catch up on rest.

He was at the hospital before 10 p.m. Saturday but wasn't checked in until midnight. Then the tech had to hook him up to all kinds of gadgets (with goo that doesn't wash out well). He woke up around 5 a.m., pressed the nurse's call button and was let out after 6. We hope they gathered enough data that he doesn't need to return. We'll know more after next week's pulmonology appointment.

In other news, Steve's thrush in the back of his throat is back. He says this case is more severe than normal. He's resumed the four-times-a-day rinse that tastes awful but eventually clears the infection.

His spirits are still strong. His voice is not. It's noticeably weaker today. And he's more wobbly now than he was a week ago. He talked yesterday about dropping his steroid dose to 1.5 mg, but now he's not sure. The love-hate relationship continues with Decadron. It helps him walk, use his left arm and hand and talk. It also encourages a slimy infection in his throat, causes cataracts, thins his skin and weakens his muscles.

We constantly rely on perspective. His current symptoms aren't any fun, but it's September, almost nine months after his cancer diagnosis, and he's working full time, enjoying life with family and friends, going on outings. I am indescribably proud of how he's handled every challenge and feel so blessed that you all still check on him, pray for us and take good care of us.

Katie, Steve and Cooper on Saturday at the Nasher Sculpture Center, one of Steve's happy places