Monday, August 31, 2009


Steve can't get out of the house -- or out of bed -- any longer, but plenty of friends are taking time to bring the outside world in. He loves visits, even though we have to keep them brief to conserve his energy.

Phone conversations aren't really an option -- he can't hear well and his voice isn't reliably strong enough for the phone.

If you'd like to visit with Steve in person, please send me an e-mail with a couple of potential days and times. He generally naps from about 1 to 4 p.m., so mornings or late afternoons are best. (And, of course, if you're ill or someone in your home is ill, we'll need to reschedule.)

If you can't make it to the house, please consider sending a card or note. Steve loves to read encouraging, comforting words and enjoys children's drawings.

You can send them to: 5704 Hidden Creek Lane, Frisco, Texas 75034.

Saturday, August 29, 2009

'Weighing hope and reality'

This New York Times piece about Sen. Edward Kennedy's fight against brain cancer is an excellent explanation of the balance Steve has faced since January 2008.

Reading it stirs mixed emotions. We know how lucky we are that Steve has outlived the median expected life expectancy after diagnosis -- 15 months.

And yet there's this harsh reality:
“This remains just a dreadful tumor,” said Dr. Eugene S. Flamm, a neurosurgeon at Montefiore Medical Center in New York. Dr. Flamm, who was not involved with Mr. Kennedy’s treatment, added that when a patient developed glioblastoma, “there is not a hell of a lot you can do.”

And, though we've never questioned the treatment path for Steve's tumor, it is reassuring to read that Steve's treatment falls in line with what experts recommend.

Friday, August 28, 2009

Sweet gift

Today I received this beautiful chain with S and T charms, a gift in the mail from our friend Joy. Thank you, Joy! We miss you!

Wednesday, August 26, 2009

The week so far

Our neighbor two doors down passed away Sunday. Eddie was 42. He was diagnosed earlier this year with cancer.

He and Jenni were foster parents to Labradors. He was a top-notch runner. He was always smiling.


Steve is having a rough week.

He had a slight fever last night, which resolved quickly with Tylenol. He's developed a rattly, raspy cough and has chest pain when he coughs or breathes in.

We are changing one of the two antibiotics he's been taking. And he'll start taking a cough medicine to help as needed.

He's having severe bladder spasm pain that isn't alleviated by the bladder spasm medicine, so he's taking pain medicine more often. You know Steve is in serious pain if he asks for something stronger than Tylenol.

One of the hospice nurses who was here this week speculates that his kidneys just aren't functioning well. That's why there's sediment in his urine -- the kidneys aren't able to filter waste as well as they used to.

He has very little hearing remaining in his left ear. He can still hear with his right ear, but if you talk to him, it's best to have eye contact and speak a little loudly.


Our Steve is still in that declining body.

Last night, friend, neighbor and nurse extraordinaire Tisa came over to listen to Steve's lungs and offer some advice. She commented on how much knowledge Steve and I now have about medical issues.

In his halting, labored voice he said, "That and $4.50 will buy me a latte."


Sen. Edward Kennedy passed away last night. He, too, had an incurable brain tumor.

This article talks about quality of life in brain tumor patients as well as the role of Avastin and Temodar in extending life.


When Cooper learned of Eddie's death, he and I had a long, quiet talk.

"Eddie had cancer, and he died. Daddy has cancer, and I'm afraid he's going to D-I-E," he said.

With all my courage and a huge lump in my throat, I pulled him closer and told him: "Cooper, we can't fix Daddy's cancer. He is going to die. I don't know when. Only God knows."

Cooper told me that he would be miserable and cry every day for the rest of his life without Daddy.

We held each other and cried together.

Monday, August 24, 2009

Third grade

Cooper started third grade today!

It was a bittersweet morning. It's the first time that just three of us walked to the first day of school. But Steve gave Cooper a big kiss and smile before we left.

Friday, August 21, 2009


The best word to describe our household right now is fragile.

Steve's skin is fragile. So many months of Decadron plus the recent continuous use of blood thinners have thinned his skin terribly and made him much more susceptible to bruising.

Wednesday morning he suffered cuts on his backside, caused by seemingly innocuous contact with the bedside commode. I spent the rest of the day worried about too much pressure on the wound, so Steve was especially uncomfortable. He was placed in various positions with all kinds of pillows for support. None of them were ideal.

The wounds look much better today.

Steve's urinary function is fragile. (Sorry if these details are too much for some readers. It's just part of what we're dealing with.) Yesterday he had very little output. There was still significant blood in the urine.

I was worried that he had another clogged catheter, so I called hospice at 10 p.m., and a nurse was here by 11. She was able to flush the line with saline and get return right away, indicating that there was no clog.

When we woke this morning, there was still no additional urine. But then within two hours there was about 1,200 milliliters without any evidence of blood. Excellent!

And now he's gone about five hours with absolutely no output, despite plenty of fluids.

Steve's senses are fragile. His hearing is significantly reduced this week. His ability to speak is almost gone. His vision is changing for the worse.

All of our emotions are fragile.

Cooper and Katie have both been more verbal about how they're feeling. We've talked a lot about anger and sadness and how to express those emotions in healthy ways.

(Actually, Cooper screamed yesterday: "I'm not angry or sad! I'm mad! I'm mad that mean cancer cells marched right into Daddy's brain and nothing could stop them!")

But they're 8 and 4, and sometimes the anger and sadness is directed at people. Little hiccups or aggravations can prompt major meltdowns.

I'm more acutely feeling the pull of so many needs. The most difficult time of the day is early morning, when the hospice aide is here. Steve requires help from the aide and me. Cooper and Katie also need me at the same time -- for breakfast, getting dressed, moderating disagreements.

Despite our fragility, we're somehow still strong.

Steve's body may not be totally cooperating, but he's not giving up. He's still doing leg exercises and stretches. He uses his right side to type, eat, sketch, hold his e-book to read.

He's retained his wit and intelligence. (If you're one of his Facebook friends you have no doubt at least giggled by some of his updates this week.)

Cooper and Katie are going through all the emotions you'd expect of two young children affected by cancer. I am so proud of how they're (mostly) able to articulate their feelings.

They are sweet, loving children with over-sized personalities. They continue to adapt to constant changes and challenges. They are receiving support from a play therapist and from our hospice agency.

I wake up every day sincerely eager to get out of bed and take care of Steve, Cooper and Katie. (I admittedly was eager to get out this morning because my twin bed was crowded with four creatures -- me, Cooper, Katie and furry Margie. Margie slept with me all night; Cooper joined me when the storm began; Katie crowded in just before my alarm went off.)

We never feel alone thanks to the consistent help from family and friends. You all have made caring for the Damm family a group effort.

Wednesday, August 19, 2009

Arik and Mia's adventure

Arik and Mia are the Dallas couple raising awareness and money for cancer research by biking down the West Coast -- more than 1,800 miles.

They are riding in memory of and honor of people with cancer, including Steve. They're wearing jerseys covered with the names of honored folks. The shirt above includes Steve Damm and the dearly missed Kathleen Baskin-Ball.

I've been following their adventures online, and you can, too, by clicking here.


I baked cookies Monday night and invited Jackie over to sample them.

As we visited, she talked about the thousands of people praying for Steve.

He's been on her church prayer list from the beginning of this cancer journey. She's been taking graduate school classes at Dallas Baptist University, and she always lifts his name in prayer during class.

We were both overwhelmed with emotion thinking of so many people praying for Steve and our family -- people we will never meet but who are so essential to Steve's strength, health and peace.

I can't begin to keep track of the many prayer lists and chains that include Steve. When Steve displays superhuman strength or I summon patience I didn't think I had, I know we are relying on strength, patience and grace gifted by God.

Yesterday I received an e-mail from Sharon, who is spending two weeks in Europe with her aunt and cousin.

During my visit to the Cathedral of Canterbury this morning, I found a little chapel where you write a prayer request and it's read aloud at the next morning's daily communion service. So my request said: Please ask that God's grace and comfort be with Steve, Tyra, Cooper and Katie Damm of Frisco, Texas, USA.

We are incredibly blessed to receive so many prayers and good wishes. Thank you for continuing to pray with us and for us.

Tuesday, August 18, 2009

PICC line and ER

The new hospice RN visited this morning because I was worried about blood in Steve's catheter line.

Because Steve doesn't have any pain related to the catheter, she thinks the blood is simply from irritation and will resolve in a day or two.

While she was here, she was going to change the PICC line dressing on his right arm. Before that, she tried to flush the line with saline.

She couldn't get the line to flush. She said it wouldn't budge. We've never had trouble with the line since it was inserted in January, so I didn't know what we'd do next.

The nurse wasn't sure, either, so she called a fellow nurse who said the only options were to remove the line or to go to the ER to get additional help in a more controlled environment.

We talked about the choices for a few minutes. We're still not willing to give up the line, as long as it stays free of infection, knowing that if Steve needs IV therapy for an infection or needs blood drawn quickly, the line is our best bet. It's just too difficult to access his veins with a needle.

After we'd agreed to keep the line, we needed a way to get to the hospital. Steve is no longer able to safely get in and out of a car. An ambulance is the only option. But I didn't want to call 911 -- we didn't have a true emergency.

Instead, I called our local fire station. The guys there know us pretty well by now. I explained our situation, and they agreed to pick up Steve at 1 p.m. and take him to Plano Presbyterian.

I then called Betty, who drove up from North Dallas to take care of Cooper and Katie. Teresa, Katy and David from church had already planned to spend the afternoon playing at our house, so they were here, too.

Steve was seen quickly in the ER. And the nurse was able to flush his line immediately.

Great news! (Though I sure wish we had known that before we forced Steve to endure an afternoon going to and from the ER.)

Then our only trouble was how to get home. The Frisco paramedics couldn't take Steve home -- they can only deliver you to the ER. So we hired a private ambulance service and waited for more than two hours.

We were home just before 5, thankful for a happy ending (and happy to be home in time for a visit from Jessica, Steve and baby Sebastian).

Steve has no new symptoms this week -- just variations of the regular ones. His voice is almost nonexistent today, apparently a combination of extreme shortness of breath and weakened vocal chords.

Whenever there's a new medical team member -- paramedic, nurse, doctor -- looking after Steve, I'm quick to point out that he's unable to talk well but that he understands everything. I don't want him to feel excluded from decisions or conversations even if I have to speak for him most of the time.

Sunday, August 16, 2009

Drama, Part I

Steve tells the story better than I do, but I'll try.

During his senior year at W.T. White, he tried out for a play for the first time. He was named the understudy to the actor playing Van Helsing in Dracula.

He showed up at rehearsals but didn't really participate -- he just watched.

About three days before opening night, the student playing Van Helsing was disqualified because he was failing a class. (This was in the early days of no pass, no play.)

So, Steve became Van Helsing. He didn't know any lines or blocking.

He stayed up all night the night before the first show to memorize his lines and develop a German accent. (This is when his German language classes really came in handy.)

Steve had tall hair that had to be shellacked down for the role of Van Helsing, his friend Shawn remembers.

By all accounts, he was a hit.

Kent, Shawn & Steve

The drama teacher asked him to stick around for the year.

Steve got the lead in the one-act play White performed that year -- Robert Falcon Scott in Terra Nova. He was named best actor at the UIL area or region contest (he can't remember which).

Far right: Kent, Steve & Shawn

Later that year, he played Buffalo Bill in Annie Get Your Gun.

Shawn (Whalen) Shinn, one of Steve's high school friends, just sent a fun care package of photos from those days. Cooper and Katie loved seeing Daddy from high school, dressed up in so many ways -- even as a cheerleader for some kind of spirit day.

Stacey, Steve, Shawn & Trisha

Saturday, August 15, 2009


Steve and I both love the television show The Office -- the British and American versions.

My favorite American episode is "The Injury," in which Michael burns his foot on a George Foreman grill. If I ever need a quick pick-me-up, I just have to watch the opening minutes of that episode -- guaranteed laughter.

Here is some of the dialogue.

Michael: Okay, Buhh! I burned my foot. Very badly on my Foreman grill and I now need someone to come and bring me into work.

Jim: You burned YOUR foot on a Foreman Grill?

Michael: I enjoy having breakfast in bed. I like waking up to the smell of bacon. Sue me. And since I don't have a butler, I have to do it myself. So, most nights before I go to bed, I will lay six strips of bacon out on my George Foreman grill. Then I go to sleep. When I wake up, I plug in the grill. I go back to sleep again. Then I wake up to the smell of crackling bacon. It is delicious, it's good for me. It's a perfect way to start the day. Today I got up, I stepped onto the grill and it clamped down on my foot, that's it. I don't see what's so hard to believe about that.

You can go here to see the clip.

Steve, knowing how much I love the episode, recently ordered me my own Foreman grill. On the card:

Till you get your butler. Love, Steve

So now whenever I need another pick-me-up, I just look at the card or grill a sandwich for the kids. Isn't Steve the best?!

Friday, August 14, 2009


Yesterday evening, around 8 p.m., I noticed that Steve's urine output (as seen in his Foley catheter bag) was unusually low.

I talked with Dr. M about it. She said to watch it overnight and to get Steve to drink more liquids, in case he was dehydrated.

So Steve drank a lot of water before bedtime -- on top of all the water and juice he'd had throughout the day.

When I went to bed at 11:30 p.m., I was worried to see that there was no more output in three and a half hours.

At midnight, Steve woke up in horrible pain at the catheter insertion site.

I called the hospice answering service. Then I called Cyndi, a friend and RN, who was aware of Steve's condition earlier in the night. Her over-the-phone diagnosis was a clogged catheter. We decided that a pain pill was the best I could offer him until help arrived.

Then the hospice triage nurse called, and I told him the trouble. He called the nearest on-call nurse.

She arrived around 12:45 a.m. She removed the old catheter (which indeed was clogged with sediment) and inserted a new one, all while Steve was in excruciating pain -- a 9 on a scale of 0-10.

By the time she left around 1:30 a.m., his pain had dropped to about a 4.

Today he is pain free but exhausted from the ordeal and lack of sleep.

We are thankful that the problem, though very painful, was relatively easy to solve. And now we know to ask for the line to be changed every two weeks instead of the more standard in-home guideline of every four weeks.

Thursday, August 13, 2009


My Briefing column today (with thanks, as always, to super editor Will) ...

For now, it's tough to focus on photos of happier times

My lifelong love of photographs is waning. I don't expect it's a permanent condition, but I can't ignore how they make me feel these days.

When I was growing up, one of the most special nights of the year was when my family would gather in my grandparents' living room for the slideshow. We would carry in boxes of slides from the garage, set up the projection screen and settle in for hours of entertainment.

It was at their house that I would also pore over photo albums meticulously compiled by my grandmother. I loved the images from the '40s through '60s as much as those that included my sister and me.

The details from those photos are permanent fixtures in my memory. The hand-tinted cardigan sweater Gramma wore in her senior high portrait. Drought-defying roses blooming in their West Texas backyard. The coordinating robes family members wore one Christmas morning.

My adult life has been documented with countless photos, and very few of them are catalogued with Gramma's precision. Some are in albums, some in photo boxes, some still in the envelopes from the store.

We haven't used proper film in years, and most every photo since 2005 is trapped in one of four hard drives in the house.

The computer in our bedroom has a screensaver with a 21st-century version of Grandpa's slideshow. All day long, photos randomly appear on the monitor.

Steve holding Katie in the minutes after she was born. Cooper about to kick off at his first soccer game. The three of them opening gifts on Christmas morning.

These days, I keep the monitor dark. I just can't bear to see images of "old Steve."

Steve is under care of hospice. Blood clots in his lungs have forced us to discontinue the chemotherapy that fights the inoperable tumor in his brain stem. He lives at home, spending almost every moment of every day in a hospital-style bed.

He can't hold Katie or attend a soccer game or even sit up unassisted.

In the first year after his diagnosis, though, Steve was mobile. Back then, when I looked at the older photos of Steve, I saw them as a sign of hope. One of my many prayers was that Steve would return to his active lifestyle and that the images from the months and years before would not serve as history but as a promise of what would come again.

When I look at the photos now, I feel a great well filling inside. I cherish the memories of our time before cancer, but I have trouble seeing the evidence. The not-so-distant past is just too painful as we focus on the difficult present and scary future.

Last weekend, two new hospice aides were in our home to help with his morning routine. They admired framed photos of Steve with various family members on display in our bathroom and bedroom.

"Oh, he was handsome," one said to the other.

I was quick to reply, "Yes, he is handsome."

For one, he's still here, in the room. A bright, witty, compassionate soul trapped in a 40-year-old body that refuses to function well.

Second, his face may be swollen from long-term use of steroids that control his neurological symptoms, but he is still handsome. He has the same striking eyebrows and strong nose and playful eyes today as he did two years ago.

His smile, now a little lopsided, still melts my heart.

Most of all, his beautiful spirit still shines through. That's the image I'm most focused on now. Those other old images, as beloved as they are, will have to wait.

Tyra Damm is a Briefing columnist. E-mail her at

Wednesday, August 12, 2009


New nurse
The new hospice nurse visited today. The experience was wonderful.

She was warm, comfortable with all four of us, friendly and not overbearing. She definitely has opinions, but she also seems open to ours.

We weren't scolded for Steve's PICC line (which we've chosen to keep for now) or questioned suspiciously about our lack of a DNR (which is an ongoing discussion).

We both expect the hospice experience to be much more pleasant with this change. (And I'm thankful for all the support from family, friends and blog readers.)

Steve's week so far

Kisses from Cooper and Katie

Steve isn't feeling well this week. There's not a big symptom he can point to or pain to complain about. He just feels lousy all over.

We did have a scare Monday night.

I woke him up at 8 p.m. from a long afternoon nap so that he could take medicine and eat dinner.

He had a slight fever, felt nauseous, threw up a little and had awful congestion and a headache.

I called all of Dr. M's phone numbers (she called once, long ago, from her home, and you better believe I saved that number), and she called back in 10 minutes.

We reviewed his symptoms and the possibility that he was about to return to the hospital.

We decided then to:
  • Give him Zofran for nausea.
  • Increase his oxygen to 6 liters, up from 5.
  • Start a new antibiotic, in addition to the one he's already on, in case there is still an underlying infection.
  • Change breathing treatments to a schedule, rather than as needed.
  • Go back to 16 mg of Decadron, after dropping for three days to 12 mg.
Within two hours, he was much better. I think part of the problem was that he was dehydrated (based on the output in his catheter bag) and that drinking more water helped some. Steve did say later that night that he had been afraid to drink much throughout the day because of the coughing it was provoking -- he desperately wants to avoid aspiration.

Tuesday was a better day. Today was rough.

He is exhausted. He misses being outdoors. He is short of breath all the time. He can barely talk. He says he feels helpless.

And you and I can't do anything to fix it. So I hold his hand and cover his face with kisses and rub the hair returning to his head and tell him I love him.

Katie decided to eat dinner right next to Daddy last night.

Our friend Natalie flew in from Florida this weekend and spent a few days with us, helping with everything and everyone around the house.

She left her own family of three children and husband Ronnie (a friend and former Morning News colleague) to help. She left their youngest child, Mandy, who is also battling brain tumors.

Mandy was diagnosed with bilateral optic gliomas one month after Steve's glioblastoma diagnosis. She's endured IV chemotherapy every week since.

Of all of our amazing, wonderful, fabulous friends, Natalie "gets" what we're going through more than most. (It's a club for which we emphatically wish we were ineligible.)

You might expect me to write something like, "I can't believe that she would give her own time away from her family and her daughter fighting cancer to help others ..." But that would be insincere.

She's exactly the kind of person you would expect to fly across the country to wash our dishes, sort through insurance Explanations of Benefits, pick up treats at Starbucks, fold our clothes, clean out closets, grocery shop, help with Steve transfers and more.

Natalie, Cooper and Katie

Like a fairy tale
Being on the receiving end of so much selflessness and compassion is humbling. Our family experiences it all day, every day.

Take today. Betty spent the afternoon here with Cooper and Katie so that I could edit on deadline. Kelly brought dinner and left with a basket of towels to wash. Layne and Martin fixed a problem in the yard. Liz helped with nighttime chores so I could grocery shop (something I actually miss and like to do on my own occasionally).

When Steve was so ill Monday night and I was on the phone with Dr. M, I was supposed to be walking with friends. When Allison, Kris and Liz showed up on the front porch at the appointed time, I just waved them in the house.

They got to work right away. Allison read with Cooper, Liz read with Katie, and Kris cleaned the kitchen.

Allison later compared the experience to Cinderella (me) and the mice (them). I laughed but suggested that they should at least be considered fairy godmothers.

We are surrounded by so many fairy godmothers and godfathers -- family members and friends who reflect light, who embody goodness, who lavishly share love.

Tuesday, August 11, 2009

New hospice nurse

I do not like confrontation. I do not like to think I'm hurting someone's feelings. I don't like to create drama.

But I am Steve's advocate for the best possible care.

So today I gathered the courage to ask our hospice agency to assign a new RN to Steve.

"Tom," Steve's nurse since we started hospice service in early July, has been antagonistic at times. For weeks I have tried to ignore his bedside manner and focus on the competent care he was providing Steve.

After discussing the situation with Steve, Dr. M and others, I decided that we could no longer overlook Tom's attitude and demeanor. He's just not a good fit for our family right now.

Twice he told me that Steve's body could be riddled with tumors. Both times I told him that glioblastomas don't metastasize outside the brain or spinal column. (The second time I was more forceful than the first.) He speculated that congestive heart failure had caused Steve's swollen arm -- even though he'd seen no vital signs or EKG results. He actually hadn't even examined Steve when he threw out heart failure.

There were many other moments during our time together when I would think, "He's making this process more difficult than it already is." There's enough difficult about Steve's situation now -- we don't need layers of stress needlessly added.

I don't want this part of the journey to be muddled with a personality that doesn't fit into our home. I want Steve to be treated with nothing but dignity. I want him to be surrounded by all the love and positive energy and warmth and compassion that he deserves.

The hospice agency's social worker and clinical director were very helpful and understanding when I requested the change. I expect we'll meet the new nurse in the next couple of days.

Saturday, August 8, 2009

Sweet Stevie D

After Steve woke from a long nap today, he stared at me with teary eyes and sleepily whispered, "I like to look at you. You're my angel."

Friday, August 7, 2009

Priorities and Steve's voice

Steve enjoyed a visit yesterday with Debbie, our church's music minister and choir director. Steve was a choir member until December 2007, when symptoms prevented him from continuing. (His voice was changing because of the tumor we didn't yet know was a tumor.)

They chatted for more than an hour. I was in and out of the room, and when I was in the room, I was often working.

I did hear Steve talking to Debbie about priorities -- how it's important to realize life's priorities and to make adjustments while you can.

In one of Steve's roles with this current employer, he worked brutal hours. He'd leave Frisco around 5 a.m. many days to make a 6 a.m. meeting. He'd work all day and then attend a late afternoon meeting. He'd get home around 7 or 8 p.m.

On Wednesday nights, he'd get home even later, because he had choir practice. He would leave before anyone was awake and come home long after Cooper and Katie were asleep.

He doesn't regret that he was in choir. He loves music, loves the fellowship, loves being a part of worship.

He doesn't regret his job. He loves to work, loves to solve problems, loves to be around people helping children feel better.

He does wish he could have arranged Wednesdays differently. Maybe found a way to reschedule the early meeting or miss it some weeks. Or find a way to come home between work and choir practice.

There were some Sundays back then, I admit, when I would wish that Steve was sitting next to me, Cooper and Katie in the sanctuary, instead of sitting in the choir loft. He would often leave the house earlier than us, to arrive in time for practice or for the early service.

Many Sundays I was on my own to wrangle two children into church clothes and to corral them during services.

But when I would see Steve in that choir loft, singing with great enthusiasm, any frustration would just melt away. And my heart warmed every time tiny Katie would wave and say, "Hi, Daddy!" across the sanctuary -- even at the most inopportune times -- or Cooper would run up to the loft to give his Daddy a big hug after children's time.

Now the most difficult part of a church service for me is when the choir sings. I love their voices, but I can't help but miss seeing Steve in that friendly crowd, hearing his beautiful music.

I am wistful for those days when there were three of us in the pews and one of us in the choir.

I am thankful that Steve still has a voice -- weak and faltering as it is -- so that he can continue to share his stories, advice and his love for others.

Thursday, August 6, 2009

Since we've been home

Steve's condition
Steve is continuing to catch up on rest. It's definitely more peaceful at home, but he's also adjusting to a huge increase in Decadron, the steroid he takes to help control swelling and symptoms of the tumor.

Dr. V, the attending we saw Saturday through Monday, wanted to try 16 mg a day, up from 8 mg, to see if it helps with Steve's weakness. The only difference we've noticed so far is stronger voice (a wonderful thing to hear) and some difficulty sleeping.

He did sleep well last night, though, and had a nap this morning.

His arm swelled significantly again yesterday; today it's more normal though still puffy. Yesterday our amazing massage therapist worked on him and his arm for about an hour. Steve was fast asleep when Trish finished.

Transitions from the bed to the bedside commode aren't smooth. He requires two people at all times, and even then I'm nervous. The hospice aide is a great help, though, and she and I make a good team.

I've also hired a sitter (and former nursing home aide) to help me three nights a week. I won't be able to take off while she's here, but she will provide consistent help and give me some time to focus on Cooper and Katie at night -- especially important now that school is about to begin again. The sitter fees are an out-of-pocket expense, which we'll able to pay for through the generosity of all the Kick the Damm Spot donors.

Steve receives a steady supply of oxygen from an oxygen concentrator. It's supplied through a vendor that works with our hospice agency.

A light came on this week indicating that the oxygen wasn't pure enough. So late yesterday, the vendor delivered a new one and said the old one had a cracked cylinder.

About two hours after using the new one, an awful high-pitched beeping sound began, and a red alert light was on.

I turned it off, let it rest and turned it on again. Thirty minutes later, the beeping began again.

So I turned it off and hooked Steve up to one of the backup tanks -- great for travel or emergencies but not ideal for a night of restful sleep. He's on 5 liters, which empties a tank in about two hours.

I called the vendor for help. An on-call driver returned the call. He sounded sleepy. I described the problem. Then he sounded sleepy and grumpy.

I told him that I didn't want to have to wake up every two hours to switch the tanks. He assured me that one tank would last six to eight hours. I told him that, in my experience, that wasn't accurate.

He sighed. He was quiet. Then he agreed to drive a new machine out.

After I hung up, the supervisor called to check on the status. I told him the driver would bring a new machine, but that he wasn't happy about it.

The supervisor said he'd call someone else, who lived closer, and apologized for the rude customer service.

By 11 p.m., a new concentrator was delivered by a cheerful driver. The machine works really well.

More guests
Longtime friend Matthew, who currently lives in Florida, spent last night at the house. He's on a visiting tour, catching up with family and us before school starts. (He's a newspaper-reporter-turned-guidance-counselor.)

Steve and Matthew this morning

Cooper and Katie treat Matthew like a jungle gym, and he never seems to mind. So he spent much of the visit wrestling with Cooper and giving piggy-back rides to Katie.

Steve is really enjoying this string of visitors, and another is on her way! Natalie, another friend now in Florida, is leaving her family for a few days to spend time with us and help around the house.

Monday, August 3, 2009

Happiness is ...

... seeing Katie painted as a Katie-fish (courtesy of the talented Aunt Melane).

... seeing Cooper make new friends and sharing Pokemon cards.

... seeing Steve reunited with fraternity brothers (Norm and Cory).


We're home. Updates to come.


We're waiting on the team to round to let us know if Steve can go home today.

Steve's arm is almost back to normal. It's still a little puffy, but you can see evidence of bones. No one knows the cause, but either the IV antibiotics or the passage of time made it better.

Otherwise, he's stable. He's still short of breath, but that's not a symptom we expect to disappear soon. He's still very weak physically, but that's not going to get fixed while he's here.

Even though we're waiting, the day is passing quickly thanks to Cory, one of Steve's college friends, who is in from Chicago for the day. They are fraternity brothers and were roommates in the ATO house their junior year. They worked together at Baskin-Robbins, took road trips to see the Northern Pikes, "studied" together.

3:50 p.m. update: The medical team gave Steve the OK to go home. We're now waiting for discharge papers and logistical details.

And now Norm, another ATO brother in town from Philly, has just stopped in. Steve is showing off the one-armed Thriller. Or rather one-l'armed Thriller.

Sunday, August 2, 2009


I'm sleepy and would rather curl up on the recliner in Steve's room than write tonight. So I'm going to be a little lazy and give you some Tweets from my Twitter account over the past few days.

From today:
I look forward to meeting some of Steve's U of Michigan ATO brothers. As many as three will be in Dallas tomorrow to visit.

Steve's arm is still swollen but better (thanks to meds?). Other symptoms the same. We're cautiously optimistic that we'll be home Monday.

From Saturday:
Steve's charge nurse just recognized me. She reads all of my columns & says she loves them. I've never been recognized by a stranger before!

When Steve calls me his "sweetheart-a-muffin," even in a tired, raspy whisper, my heart melts. Semi-related: I really hate cancer.

Starbucks would make lots of money -- from me alone -- if it set up shop at St. Paul.

The maximum time to sleep on one of these recliner "beds" seems to be 5 hours.

From Friday:
I am back at the hospital after a delightful dinner at S&D Oyster with Liz & Kris. I am blessed.

Finally! Doctors were here. They are pleased with how Steve looks & sounds. Maybe he'll go home Monday?

I'm beginning to wonder if the hem/onc team forgot about us, way back here at the end of the hall. I asked the RN to tackle the attending.

We are still waiting for doctors to round. They've never been as late as after noon.

From Thursday:
I'm missing Cooper & Katie and laughing about the latest Katie-ism: hibiscuits instead of hibiscus.

The concept of Fruit2Day puzzles me. "A New Way to Eat Fruit." Honestly, how hard is it to eat the real thing?

I am working on returning phone messages. There are 18 of them, so it may take a while.

Our DMN friends are the best! I'm enjoying lunch delivered by Nicole.

Steve is napping after being wheeled away & back for chest X-ray. I'm wide awake thanks to latte delivery from Layne.

"An Officer and a Gentleman" is on. I probably haven't seen it since 1987, but all the dialogue is coming back to me.

Perhaps we got four hours of sleep? The first night in the hospital is always the most interrupted.

Saturday, August 1, 2009

Swollen arm

Steve's left arm swelled suddenly this afternoon. In the past few months it's become scrawny from lack of use. Today it was puffy and huge.

Steve said it looks like he has a leg for an arm. So we've started calling it his l'arm.

The nurse paged the resident, who ordered a sonogram to check for a blood clot.

And Steve and I giggled. Because, really, how many more clots or other problems could he endure? Laughing seemed to be the best response.

So a transport tech wheeled Steve in his bed to the second floor, where a radiology tech checked his neck and arm.

I studied the imaging and scrutinized for clues. I was a clueless.

A few minutes ago, the night nurse told us that the report shows no clot. Whew!

So what could be causing the sudden swelling? The next guess is an infection. So Steve is back on an IV antibiotic. I don't know yet how many doses he'll get.

Early this afternoon we visited with the new team on call. Dr. V wants to be sure that we're comfortable going home and have everything in place before we leave.

Now I need to explain our on again, off again relationship with hospice.

When we decided to head to the emergency room and consent to treatment Wednesday, we were also deciding to discharge from hospice.

The idea of hospice is to make patients comfortable until they pass away. Hospice does not provide "aggressive treatment." Going to the ER, getting IV drugs and being admitted to in-patient care is considered aggressive.

(When Steve is enrolled in hospice, our insurance company pays a daily rate to the hospice group. So any care provided during Steve's enrollment time must be paid for by hospice. Hospice doesn't want to pay for hospital visits.)

Our social worker met us in the ER on Wednesday afternoon, and I signed papers that discharged Steve, with the understanding that we would re-enroll upon release from the hospital.

After we learned today that Steve is ready to go home when we are, I spent some time on the phone with our hospice social worker.

The current plan is for a hospice nurse to visit Steve in the hospital tomorrow to evaluate for admission to hospice. (They have to do this every time we request service again.)

And then by Monday, assuming that Steve is stable (and the whole l'arm thing is taken care of), we should be able to go home with hospice re-instated.