Rehab update

Steve is making excellent progress in rehab. I am just so proud of how hard he's working and how much he's accomplished so far.

In physical therapy, he's been able to walk with a walker on flat surfaces and on steps with rails. His PT uses a stretchy bandage to wrap his foot and calf, which gives him an artificial way to keep his foot from dropping and dragging.

Steve and M, his cheerful PT (grainy photo with my Blackberry)

In occupational therapy, he's focusing on that stubborn left arm. His movement has improved a great deal, and the therapists are pushing him to push and pull and lift.

All the activity is definitely taking its toll. He was exhausted Sunday but had more energy this morning, which he spent right away on three hours of exercise.

Steve was wheeled away for about an hour this morning for another sonogram of his right leg. The blood clot is bigger now than it was last week, which is what Dr. N expected would happen.

There are still risks that parts of the clot could break off, even with the filter in place, so we're paying close attention for shortness of breath and chest pains. He's had shortness of breath, most likely related to physical activity, but no chest pain. Yesterday he had a chest X-ray that returned clear -- no signs of concern.

The team meets tomorrow to discuss all the current rehab cases and make recommendations about continued care. I expect they'll request about another week of therapy, but that's just based on my intuition and putting together clues.

We're also waiting to hear the status of this week's previously scheduled MRI and when Avastin and Carboplatin can be administered again. One of our many current prayers is that the timing of the next treatment is precisely correct -- that we don't wait too long and that we don't rush and risk a poor healing process.

Change

I usually embrace change.

Almost a decade ago I was part of a team that introduced a new front-end and pagination system to the Dallas Morning News newsroom. We trained hundreds of journalists on the new software. Some folks had never even held a computer mouse before.

Our team knew that change was difficult for many employees. Part of our job was handling the emotions of the transition. I was good at this job.

The past year and a half has brought drastic change to the Damm family. The impetus for the change -- a few rogue cells that multiplied and created the Damm Spot -- is awful. But for the most part, I think we've handled the resulting transitions well. We keep looking for and celebrating the silver linings.

Steve has been able to spend more time with Cooper and Katie, as he's not spending 10 or more hours a week commuting to and from work. Instead, we drive him as a family to work or, more recently, he works from home, surrounded by more love and joy than we could hope for.

We've been showered with good wishes, gifts, prayers, visits and more from the most amazing support group. At least once a day a friend or acquaintance marvels at how good you all are, how blessed we are. It is so true.

We are reminded hourly of what matters most, and most of the time we try to honor those priorities.

There are changes, though, that catch me off guard and break my heart more than I anticipated.

When Steve comes home from physical rehab, he'll need a hospital bed for safety and ease of movement. He probably needed one weeks ago, but his fall accentuated the acute need. The Zale Lipshy social worker is helping us secure one.

To get ready for the new bed, today the old bed -- the one we chose for the first home we bought, in 1998 -- was packed away. Uncle Greg and friend Jeff arrived early this morning to dismantle our bed and an antique dresser and move them to a nearby storage unit. We also moved a cabinet from the bedroom into the dining room.

A twin bed for me is in our room now, and a big open space in the middle waits for Steve's new hospital bed.

I think that I've cried more over this change than anything since Steve's diagnosis.

The change is so obvious and symbolic. I just didn't expect it to hit me so hard.

Cooper and Katie have found a silver lining already. They love the temporary open floor space and abundance of pillows laying about.

I trust that in time I'll handle this change better, too. Steve's safety and comfort are most important, and I expect my emotions will catch up with that reason soon enough.

I hesitated sharing all this because I don't want to monopolize the storyline here or worry folks needlessly. But I also want to portray our lives as they are.

This change and so many others are certainly made smoother by you, our dear friends and family.

*****

Steve looked great when we visited with him this afternoon. The physical and occupational therapists pushed him through rigorous exercises, and he was deservedly tired.

He sounds more winded today than he has recently -- maybe because of all the activity? He's on oxygen almost all the time.

He'll have Sunday off from all therapy. The whole Damm family will meet on his floor for lunch to celebrate Mother's Day and Betty's birthday. We'll try to not be too rowdy!

Big steps

During Steve's morning PT session, he aced walking with the help of parallel bars.

So he took a spin on the floor! He used a walker and was spotted by two therapists, allowing him to walk down a long hallway. These were his first big steps since he fell almost two weeks ago.

Go, Steve, go!

Waiting on procedure

Steve is still in his hospital room. We're waiting to learn what time his procedure will be. He's starting to get hungry -- he's not allowed to eat or drink anything until after the filter is placed.

*****

Yesterday I reported that the clot is in his left leg. We all thought it was, based on Steve's swollen left leg. But the resident, Dr. C, triple-checked the radiology report that identifies the clot in the right leg.

We're shocked. There are no visible symptoms on his right side.

We are especially thankful that Dr. N ordered a scan on both legs.

*****

UPDATE: Dr. G, the doctor who will place the filter, just visited with us. The procedure will begin around 11:30 a.m. and will last about an hour.

He will be under moderate sedation; the incision will be in his neck. A catheter will be used to move the device to the correct place in his groin.

A new wrinkle: DVT

A blood clot (or DVT, for deep vein thrombosis) was discovered today in Steve's left leg.

Yesterday when Dr. N was examining super Steve, he noticed Steve's swollen left leg and foot. We told him that the swelling has been an issue for a few months. I told him that two sonograms revealed no clots in his leg.

Dr. N ordered a sonogram of his leg anyway, just to be cautious. (Obviously it's a good thing I'm not the one ordering -- or not ordering -- tests!)

After Steve's first physical therapy session this morning, he returned to his bed and was wheeled off to imaging. He returned an hour later in good spirits.

About 30 minutes later, Steve's nurse told us the news.

We haven't spoken with Dr. N yet to learn how the clot will be treated. The usual course of treatment is blood thinners, but I'm not sure if that will be complicated by Steve's Avastin history.

One of the side effects of Avastin (the bio-agent that Steve has been taking since late 2008) is increased risk of DVT. Steve had been scheduled for another Avastin treatment today, but we canceled that this morning, before we knew about the clot, in favor of continued therapy at Zale. I've e-mailed Dr. M and her nurse to make sure they are aware of this wrinkle.

We do know that he's on bed rest for the remainder of the day. No more physical, occupational or video game therapy (Wii-hab!). No shower.

Insurance approved seven days of rehab yesterday. We used one Tuesday just by checking in. We're using another today, in which Steve received about 30 minutes of physical therapy. (That session was great, by the way! Steve was able to walk, using parallel bars and some help from the PT. He felt some discomfort in his lower back, but he powered through and impressed the PT and me.)

One of our concerns now is that Steve is going to burn through rehab days without really getting much rehab.

When I update later, I hope to be able to report:
1. How the clot will be treated
2. What happens to Steve's precious rehab days

We take great comfort in the many prayers on Steve's behalf. And we're cheered by a new catchphrase, courtesy of Julie: Out Damm Clot!

Too fun not to share

A therapist is visiting with Steve right now. He'll be working on Steve on some physical and cognitive exercises. Sometimes they'll use a Wii for balance and hand-eye coordination.

They call it it Wii-hab.

Steve at Zale

After we got the call this afternoon, we sprang into action. Steve called his mom, who drove up right away to take care of napping Katie and Cooper, who would be coming home from school soon. I gathered Steve's belongings and called the Bassens for help getting Steve into the car.

We pulled into the Zale Lipshy valet area, and the intake nurse arrived to help Steve out of the car, into a wheelchair and onto the rehab floor.

We spent the next couple of hours going over medications, schedules, expectations and other introductory details. We met Dr. N, the physician who will oversee Steve's treatment, and his resident, Dr. C.

We learned that because of swine flu fears, children younger than 12 aren't allowed on patient floors. I had had big hopes of the four of us eating dinner together and reading bedtime stories in Steve's room. We'll just have to move the visits downstairs to the lobby.

A respiratory therapist stopped by to check Steve's pulse-oxygen levels and start his breathing exercises. She is the same RT who helped Steve at St. Paul a month ago. She chatted with us for a while, describing her husband's recovery from cancer 13 years ago. And she shared her belief that a good attitude is essential to healing.

We, of course, agree.

I left after Steve finished dinner. We've decided that during this stay I will spend nights at home so that we can both rest well.

I'll return early Wednesday morning to meet the physical and occupational therapists as well as the social worker, who will help with arrangements for home accommodations.

*****

One of my high school friends, Angela, delivered dinner to the house tonight. She made Steve's favorite dessert, pecan pie.

When I told Steve about the dessert, he reminded me of one of our favorite grocery store stories.

The week of our first Thanksgiving together, I wanted to make chocolate pecan pie to take to a dinner. I'd never made any kind of pecan pie before, so the ingredients -- as simple as they are -- were new to me.

Steve and I shopped together, and we couldn't find the Karo Syrup. We couldn't even pronounce Karo. A fellow shopper took pity on us and led us up and down aisles, saying loudly, "Where's the Kay-ro? Where's the Kay-ro?"

We laugh about that moment every time we see a bottle of corn syrup or talk about pecan pie. (And sometimes we recall that I burned the pie. There were a few baking disasters that first year.)

Monday

Here is the current get-Steve-into-physical-rehab plan.

1. We wait to hear from UHC if they have approved his admission.
2. If we don't get an answer by noon Monday, then Dr. M will work on admitting him to Zale Lipshy. (This may take some careful wording/finagling. Oncology doesn't admit to Zale; the team admits to St. Paul. But we don't want him exposed to all the flu, pneumonia, who-knows-what-else germs floating around St. Paul.) Then we'd work on getting him transferred from a regular floor to the physical rehab floor.
3. Either way, he should be at Zale sometime Monday.

This could all be complicated by a new symptom. Steve developed a crackle in his chest overnight, which gave him fits trying to sleep. He has no fever right now. I'm checking him often. If he starts getting chills or a fever, we'll call Dr. M and then an ambulance. Then we'll have to deal with St. Paul -- we'll have no choice.

I'll update later today if there's news. I hope, though, that I don't need to update until tomorrow, with the good news that Steve is on his way to Zale.

Continuing to wait

I spent a lot of time on the phone and on hold today, trying to get the admissions process moving. I was patient but firm. I used phrases such as, "Before we begin, I should let you know I'm very frustrated," and "What other recourse do we have?" and "We are concerned about safety at home."

I had no luck. Neither did the case manager at Zale.

(I did learn that UHC has a Rapid Response Team, which I'm going to ask for every time now, and that you apparently have to ask three times for a better answer before a representative will give you one. When it was clear that I wasn't going to hang up, the customer service representative was more responsive, though certainly not helpful.)

I think we have two options:

• Continue to wait for UHC to approve admission to rehab, which wouldn't happen until Monday at the earliest
• Push for admission to a regular hospital floor and then transition Steve to rehab, which could happen this weekend if Dr. M agrees

There are problems with both. In the light of the new day tomorrow, we'll work on an answer.

I regret that with the physically and emotionally wearing week we've had, I've decided to back out of running the 5-mile race at White Rock with friends Saturday morning in honor of Steve. We can't wait to see photos of the Run for Steve team and hear about the great show of support for super Steve!

Update

We're still home. Thankfully, Steve is doing OK. He slept well, and I was able to get him out of bed and up for the day on my own. (I definitely need help at night, when Steve is most fatigued and has run low on right-side strength.)

I spoke with a benefits employee with Steve's work this morning. She says that the United HealthCare account manager says Steve's stay has been approved. There's an admission number in the system.

Then I called the case manager with UT-SW who is trying to get Steve admitted. She says the that the admission number in the system doesn't really mean anything.

She also says it's highly unusual -- as in she's never seen it happen -- for a patient to be admitted to rehab from home. In addition, as of yesterday, a nurse case manager at UHC hadn't yet been assigned to Steve's case.

The case manager is going to recommend to Dr. M that, if we haven't received approval by 2 p.m. today, she admit Steve to the hospital for weakness and falls. He'd stay in the hospital for two days or so and then be transitioned (we hope!) to rehab.

So we continue to wait. We are thankful that Steve remains comfortable at home and that we've been able to keep him safe. Right now he's working and listening to Katie and best friend Noe chat in the playroom, just a few feet away. From the dining room table he can see activity on our street and glimpse pretty spring flowers and a full, healthy tree in the front yard.

Still no admission

We haven't heard from anyone today about Steve's admission to rehab at Zale. I've contacted Dr. M, who said she would check on the status.

Our home health physical therapist visited last night and instructed us both on proper technique for transitions -- from chair to wheelchair, from wheelchair to bed, etc. As long as he still has use of and strength in his right side, Steve is able to help a great deal. I'm there to help with the initial boost, to hold on tight and guide him to the right spot.

Steve slept fairly well last night and has been working from home all day.

Thanks for checking on sweet and amazing Steve!

Evaluation

The UT-SW outpatient therapy clinic called before 8:30 a.m. today and asked if we could have Steve there by 10 a.m. The scheduler told us to be prepared for possible admission to the inpatient service.

We scrambled. Liz took Katie to school for me. I packed a bag and made other arrangements. Layne and Bob lifted Steve from the bed to the wheelchair and eventually to the minivan.

Once at the clinic, we required more help to get him out. A tiny but strong physical therapist gave Steve a great big hug and danced him over to the wheelchair.

We were a little late for the appointment, but we made it.

Dr. R evaluated Steve and determined that he is a good candidate for physical rehab. And then she told us that we'd need to go home and wait. Insurance still hadn't approved the admission.

I admit that I was overwhelmed at the thought of getting Steve safely back into the car and home and then forcing him to do it all over again. But we had no choice.

Before we left the building, we went to radiology for an X-ray of Steve's back. He's been having severe back pain, which we suspect is muscular after Monday's fall, but Dr. R wanted to be sure. We haven't heard back, so we assume he's not suffering from broken vertebrae.

The same physical therapist returned him to the car.

When we got home, Martin was waiting for us and moved Steve from the car to the wheelchair to his home office spot in the dining room. Liz arrived shortly after with lunch.

So now we're both working from home, waiting to hear that United HealthCare has agreed to cover inpatient rehab.

Dr. R said the stay could be a week or two. It will depend on what goals we set and how long it takes to reach them.

I'll update when we have the go-ahead to return to Zale!

No falls, but close calls

Steve's left side was worse today than even yesterday. With that, his mobility is worse, too.

He didn't fall, but there were some frightening moments in transit. I'm using all my strength to catch and hold him when he falters. Then he steadies himself and we keep moving with tiny baby steps.

We were able to get him from the bedroom to the dining room, where he worked from about 8:15 a.m. until 6 p.m.

Seriously.

As awful as the location of this tumor is -- and believe me, it's awful -- we still are incredibly thankful that he retains cognitive and reasoning ability. He's able to produce the most detailed Excel charts and tables and graphs I've ever seen.

But still, the tumor is in a terrible spot, and we can only assume at this point that it's the tumor that is causing his left-side decline. Even with the high dose of Decadron, he's losing ground daily.

Dr. M is concerned, of course, and has started the process to get him admitted for inpatient physical rehabilitation at Zale Lipshy (the UT-Southwestern hospital where Steve was unofficially diagnosed, back in December 2007).

The medical staff has accepted him. Now we're waiting on a bed pending insurance approval, which should come Wednesday or Thursday.

While a rehab patient, the staff will evaluate his current abilities and needs, and we'll set goals for discharge. He'll work with occupational and physical therapists and other caregivers as needed. I'll spend much of the day with him, too, to learn how to best care for him at home.

He'll stay overnight, which will be hard on all four of us, but we're all focused on the goal of Steve's safety at home.

Dr. M told me that she thought his stay would be for about a week. I expect we'll know more specifics after he's admitted and evaluated.

I explained to Cooper and Katie this afternoon why Steve will return to the hospital. There's a chance they'll come home from school tomorrow, and he'll already be at Zale.

When I was tucking Katie into bed tonight (the first of multiple tuck-ins), I reminded her about the upcoming hospital stay and asked if she had questions. In reply she told me that Daddy would feel a little better. And she said that they would take his tumor out. I reminded her that they can't take it out. She gently insisted that they should.

*****

Today was another day that wouldn't have been possible without the help of many kind souls.

Betty stayed with Steve during the day while I attended a parent-teacher conference, conducted a client interview and had my own doctor's appointment (just a check-up). She also picked up Katie from school and helped Cooper after school.

Kerri brought a plate of sweet treats (with contribution from Kristie). Carol brought homemade chicken stock for Steve. Melissa delivered comfort food for dinner. Jeff came over to help me lift and move Steve. Sharon spent her free time tonight helping with the whole nighttime routine, even allowing me time to run with Liz and Melanie.

I'm always comforted by the help -- and by how Cooper and Katie respond. They have learned to be flexible and to accept help from others.

When Katie wakes up at 6:30 a.m. and is told she's going to the Smith house for the day, she doesn't balk or cry. She accepts and embraces the change in plans.

Cooper loves to listen to his Daddy read him bedtime stories, but if Steve's voice is too weak (like tonight), he's happy for me or one of our trusted helpers to read to him instead.

Especially in these most trying times, we are reminded of our infinite blessings. We are thankful for the joy that peeks and sometimes bursts through when we least expect it.