Home from first treatment

Steve is resting now after an eventful day.

After getting Cooper to school and Katie to preschool, we headed south to the cancer center. The imaging folks took care of him first, taking more MR images of his brain. The images showed some growth since the last UT-SW scan -- not surprising, as recent M.D. Anderson scans also had indicated growth.

Then we met with the radiation oncology resident (Dr. G) and her supervising doctor (Dr. A). While the formal plan for his radiation therapy isn't complete (they needed a recent MRI), they weren't comfortable with waiting any longer to begin treatment. So today they started him on radiation therapy based on 2-D mapping (instead of 3-D mapping). From what we understand, they are aiming for a conservative target now and will get closer to exactly what they're aiming for sometime next week, when the formal plan is ready.

While we were in the exam room, Steve's co-workers Lori, Ray and Wendy popped in to check on Steve. They were just in time to whisk us away for lunch, giving the doctors time to map out the temporary radiation plan.

After lunch, we returned to the cancer center, where Steve received his first treatment. He reports that it was quick and painless. The treatment continues now for about six weeks, every weekday. (He won't start taking the oral chemotherapy until Monday.)

Steve's voice problems apparently are caused by damage to the 10th cranial nerve, which is one of the most crucial of the cranial nerves. It serves the throat, larynx, trachea, lungs, heart, esophagus and most of the intestinal tract. He's lost most of his gag reflex and is at a high risk of asphyxiation. He may begin to have trouble swallowing thin liquids (apparently without warning), including water and juice. So we're using a product called Thick-It that thickens liquids without adding taste.

Thank you, Zita, for taking care of Katie after school, and Christie, for taking care of Cooper. We also appreciate all the good wishes for today and the many who have volunteered to help now or in the future.

Radiation tomorrow

We have a change in plans because of some worsening of Steve's symptoms. His voice has become weaker and more hoarse. His double vision, which had been improving slowly since the biopsy, got much worse overnight. His right side is tingly, a new symptom altogether. And he feels more fatigue than "usual."

He spoke with the neuro-oncologist's RN and the radiation oncology resident today. The resident decided to have him come in tomorrow for radiation, instead of trying to treat the symptoms with an increase of steroids.

He already had an MRI scheduled for 10:15 a.m. Thursday. He'll keep that appointment, and then we'll just wait around for the radiation therapy, whenever they can work him in. He won't start the chemotherapy until next week.

Thank you to the many of you who have already registered with our "Damm Family Helpers" site. If you're still interested, you can log in here. I'll be adding additional volunteer opportunities, especially driving shifts, over the next few days.

Getting ready for treatment

We spent much of yesterday and some of today at the cancer center, getting ready to fight the Damm Spot.

Radiation
We met the radiation oncologist who is directing the radiation therapy (as well as his resident, nurses and technicians). Dr. A has an interesting bedside manner. He's not unpleasant, just different than what we've become used to.

He told us, "The unfortunate thing about this tumor is its location." I sort of laughed in response -- as if the only thing bad about the tumor is its deep, dark hiding place.

When I asked how many of these tumors he's treated, he answered that an adult glioblastoma of the brain stem is "as rare as hen's teeth." Sadly, they do have lots of practice with children who have a similar tumor in a similar location.

Dr. A will determine the best kind of X-rays to use and work with others to map the best entry points for the radiation. We'll meet with him and/or his resident once a week so they can check Steve's symptoms and reactions.

Today Steve had a CT scan as part of preparation for the therapy. And he was fitted for a mesh mask that he'll wear during each treatment. The mask protects his face and ensures that he'll be positioned in the exact same place each day so that the radiation will be directed exactly where the doctors want it to go. It's crucial that the X-rays hit the bad cells and, as much as possible, avoid the good tissue. There are many risks with the radiation -- his vision could get worse, he could lose his hearing -- but they are definitely worth the potential outcome.

We'll return Monday for a simulation and Tuesday for the first day of radiation therapy. His standing appointment will be 3 p.m. Monday through Friday for 28-31 days.

Oncology
We also met Dr. M, the neuro-oncologist who will take care of Steve for many months to come.

She acknowledged that reaching a diagnosis has been messy and painful. She told us we'd never forget that pain and that she's eager to help us close that chapter. Now we start the next journey -- treatment. We both felt so encouraged by her candor, optimism and attitude.

She will oversee the chemotherapy and its effects. Steve will start taking Temodar next Tuesday night, a few hours after his first radiation treatment. He'll stay on that oral chemo for the duration of the radiation, every day including weekends. The day he stops radiation, he stops the Temodar.

Then he'll take a short break before starting monthly cycles of Temodar -- probably a week every 28 days for 12 months.

We're in for some rough weeks, we know. But Steve shows no signs of fear of the fatigue, potential increase in current symptoms, potential for new symptoms, possible nausea. We only wish we could start killing those rogue cells today!

Peace

Steve continues to get a little better each day. His chief complaints (not that he's complaining) are double vision, fatigue and headaches. His spirits were definitely lifted today by so many warm hugs and wishes from friends at church and visits from family members this afternoon.

Monday will be a full day with appointments at the Harold C. Simmons Comprehensive Care Center on the UT-SW campus. We should learn more about when treatment begins and what kind of schedule to expect over the next six weeks.

Today, for the first time since Dec. 11, I woke feeling a sense of peace and calm about Steve's condition and future. Both Melane and Julie had recently described similar feelings -- a calm after the storm.

I've had the chorus from one of my favorite hymns running through my head all day:

It is well, with my soul,

It is well, with my soul,

It is well, it is well, with my soul

I've always loved the song's message of hope and embrace it now more than ever.

Making life easier

As we focus our efforts on fighting the tumor (now officially known as Spot), we continue to give thanks for the countless selfless acts on our behalf. As before, this isn't an inclusive list -- my record keeping and memory are, understandably, not at their best right now! Please know that every act of kindness is making this journey much easier.

Jim, Betty and Jim: Took care of us during the Houston biopsy experience, providing hotel, meals, running errands, whatever we needed. Betty this week stayed with Cooper and Katie while we were in Houston. Brother Jim shuttled us from Hobby to the hotel this week. And he helped with projects around our house this weekend.

Ami: Arrived for the third time in four weeks -- this time with no notice -- to take excellent care of Katie and Cooper, leaving her own sweet family behind. She spoils us when she's here and ensures that the household runs smoothly.

Betty's Lunch Bunch friends: Paid for our most recent Houston hotel stay and meals

A group of anonymous donors from our church: Sent a generous check to help with expenses

Kelly S: She picks up laundry and returns the clothes the next day clean and folded

Melissa: Researched, purchased and shipped a spare car seat for our growing Katie

Mike: Helped Cooper craft his first Pinewood Derby car for Cub Scouts

Bruce the Boss: Helped with crowd control at this weekend's Pinewood Derby

Mary MT: Provided tickets to Houston and a pleasant ride to the airport

Sally: Flew us home Friday, allowing us to spend much of the afternoon with our babes

Jen: Showed up at our front door at the exact moment I needed a hug

Leslie and Stephen: Surprise delivery of fresh berries

Bledsoe staff and family: Continue to provide outstanding care and support to Cooper and our family

Transportation for Cooper: Beth B, Bill and Cathy, Christie, Laura, Liz and Layne

ECDP (Katie's preschool) staff and family: Offering a stable, loving environment for Katie

Don and the HCUMC staff: Instant availability, counsel and wisdom

Lori and Ray: Tracking down records, driving Steve home, keeping him involved with work

Children's and PFC friends: Who have been patient with Steve's status and available for research and advice

My many bosses: Who haven't yet complained (at least to me!) about sometimes missing deadline

Carolyn and all the DI moms: Took over the Destination Imagination team that I had been coaching

Mary and Lorrie: Took charge of our adult Sunday school class

Meals and more from: Jan and Lou; Mary MT; Zita and Andy; Lorrie and Tom; Kerri M; HCUMC choir; Jennifer and Ryan; Joel and Theresa; Carole; Debbie; Ron and Celeste; Nicole; Mary and Kevin; Layne and Liz; Holly and Bob; Will and Holly; Kris and James; Bunco girls (and I know I'm missing so many other excellent cooks!)

Help around the house whenever I've asked: Julie and Andy, Sharon, Beth B, Liz, Allison, Amy, Meghan, Denna, Betty, Will and Holly, Mel and Greg

Prayers, behind-the-scenes scheming, cards, advice, gift cards, letters, phone calls, notes, fruit baskets, books, stories of miracles, people to contact for advice on treatment and past experiences from many listed already and so many more of you

Grade 4

The invader has officially been classified as a grade 4 astrocytoma, also known as a glioblastoma. It is the most aggressive kind of brain tumor. It has recruited blood vessels to help it grow.

If you look at the literature related to an inoperable glioblastoma, the outlook is grim. Dr. C told us, when asked, that some patients have about four to six months to live after diagnosis. But he also told us that they are treating Steve, not a statistical group or population. They are treating an otherwise healthy 39-year-old father of two, who until mid-December ran about 12 miles a week, who eats well, who doesn't drink or smoke.

The patients who do the best, he said, who outlast the statistical median of one year, are those who are engaged in life, who focus on family and good things. They don't sit and stare at a calendar.

Treatment plan
We meet Monday with two doctors at UT-SW in Dallas -- a radiation oncologist and an oncologist who will carry out the treatment plan drawn by Dr. C and his team.

He'll need five to six weeks of radiation, targeted at the tumor.
The goals of the radiation:
Prevent the tumor from growing more
Improve Steve's symptoms
Reduce the bulk of the tumor

Along with radiation, Steve will begin a 42-day cycle of Temodar, an oral chemotherapy that he will take every night before bed. (I learned today that if we had to pay cash for the 42-day dose, we would owe almost $12,000. Instead, our insurance should cover the cost, minus our very low co-pay.)

We'll return to M.D. Anderson a few weeks after radiation therapy is complete for a scan to get an idea of how the tumor has responded. There's just this one course of radiation, but chemotherapy will continue on a schedule yet to be determined.

Possible side effects
If the radiation is doing its job, it will kill some of those awful tumor cells. When that happens, there will be some additional swelling, which will increase Steve's symptoms. The doctors will try to control the symptoms with the steroid he's taking.

As the treatment continues, fatigue will affect Steve. He also may experience nausea, though he'll have some preventive drugs.

One of the biggest risks is a reduced platelet count, which would make him much more susceptible to infection.

Looking forward
We are eager to meet with the team here that will help to take care of Steve the next few weeks. We look forward to a few weeks at home, with no planned overnight trips to hospitals. We are so ready to fight this tumor, bracing ourselves for the inevitable ups and downs associated with the treatment.

Steve and I talked today about one of the hidden gems in his brain cancer journey. There are more treasures in this awful situation than I could have imagined, and one of them is the blatant reminder that today is truly a blessing. When tomorrow comes -- wow, what a gift.

Now, don't get the idea that we dance around the house celebrating the Damm glioblastoma. Sometimes I'm surprised that we still have tears to shed. There's been a lot of uncontrollable sobbing. Fear grabs us throughout the day. The unpredictability of our schedules and routines has created more chaos than any of us are comfortable with.

Still, we know we are loved by God and by friends and family. And we have faith in miracles.

Name suggestions

My mom suggested that Steve's tumor have a name so that when it's gone, we can write it on a piece of paper and burn it.

Weeks ago, we started calling it "the Fonz" because it rhymed with "pons," the tumor's current home. That never really caught on.

I suspect my late Gramma Kathryn has a name for it that's not repeatable.

So, if you're feeling creative, perhaps you can e-mail us your suggestion or leave a comment here.

Steve's new 'do

Had we thought through the biopsy process a bit more, we would have shaved Steve's head before the surgery. After the biopsy, he had two strips of bare scalp on the back of his head, surrounded by regular Steve hair -- hair that can't be washed for eight days.

Yesterday Ami (a former professional and still occassional hair dresser) used scissors and clippers to even out his hair, while I was careful to protect the inscision sites from stray hairs. The result is a very handsome Steve. (Cooper says his Daddy resembles Andy now. Andy has offered his services for maintaining the look. Wes, who keeps his head bald and shiny, can also provide assistance.)

His head pain is changing. The constant ache at the back remains, plus his scalp seems to be waking up, post biopsy. He has more sensation, and therefore more pain, at the incision sites and the halo sites. His vision is getting better. Today he is walking without assistance for the first time since Thursday. The double vision is still there, but it lessens a bit each day. We just don't know which symptoms are temporary, as a result of the biopsy, and which are related to tumor and swelling.

Ami stayed another night to help us settle in, run more errands, clean, move food to the new fridge and freezer, give us lots of hugs and take care of us all. Everyone needs an Aunt Ami.

Really cool

Yesterday's drive home from Houston went by with lightening speed -- partly because I drove a bit faster than I should have, partly because it was a clear, sunny day (no dark fog like on the drive down there) and partly because of Jayshree's company. If you know Jayshree, you know what I'm talking about. She has an infectious cheerfulness and ability to talk about anything.

So in no time, it seemed, we pulled up in front of the house. Steve and I had to compose ourselves for a minute. Being home, about to see the kids for the first time since the surgery and results, made the reality that much more real. With some assistance, Steve made it inside and rested.

I eventually opened the garage door and notice our refrigerator was standing where some shelving usually stands. Of course, then I had to investigate the kitchen, where I discovered a new refrigerator with a single note on the front -- a list of Dallas Morning News family members who pooled their resources to buy us the nicest new side-by-side refrigerator.

Apparently Aunt Ami, when asked, had mentioned to Will that we could use a temporary freezer for the garage, to store all the wonderful meals we've received and stock up on the superfoods Steve needs to fight the tumor. Within a few hours, Will, Sharon and Sarah had received enough contributions to buy us a second fridge.

So now we're able to stock up on all the goodies Steve requires (phytonutrients are the tumor's enemy) and shop less often -- we'll have room for so much more. And I can freeze some of the dinners that are delivered for "rainy days."

Steve and I are continually amazed by all the blessings coming our way.

Quickly

We arrived home safely, and Steve is still improving. I expect to have the energy and time tomorrow to offer full details.

Quiet day

Steve was discharged this morning, and we've been spending the day in our room at the adjacent hotel.

Symptom update:

• His sense of taste is improving. He's better able to distinguish salty, tangy and sweet foods.
• His double vision is slightly improving.
• He's still unsteady on his feet, which we attribute to his vision difficulties.
• His head pain is at about a 3 on the 10-point scale.

Family and friends update:

• Jim and Betty helped us settle in the room, shopped for plenty of fresh produce and prepared foods for our lunch and journey home tomorrow, kept us company and then flew home. Betty bought Steve an M.D. Anderson ballcap for his head (he can't wash his hair until next Friday!) and us brain cancer awareness bracelets. The official brain cancer awareness color is, appropriately, gray.
• Brother Jim spent the night with Steve again, allowing me to sleep in a real bed, and helped us in the hotel this afternoon.
• Damm family friend Rob Cook surprised us with a visit last night. His father, Charles Cook, was a beloved minister and the man who married Steve and me in 1994. Rob shared some great stories about Steve from high school and youth group days. He's now a general surgeon in The Woodlands and one of many trusted resources we've consulted through this process.
• Cooper and Katie have had an eventful weekend. Yesterday Cooper enjoyed a playdate with Dylan and an impromptu sleepover with Cade. Today they both bounced around at Connor's birthday party. (Thanks to Byron for shopping for the party gift!) Sharon and Sarah have been spoiling Cooper and Katie tonight. Sharon and Sarah arrived with dinner and gifts and let Ami have a few hours on her own.
• We had hoped to visit with both Jayshree and Swati today at the hotel, but I canceled their visits. Steve and I are both exhausted and wanted a few hours on our own before returning home. I think I've run out of adrenaline or whatever has been propelling me the past few days. We took a long nap and ordered room service for dinner. We're keeping a close watch on the South Carolina primary (Nevada just isn't that exciting) and will watch a movie soon.

We are thankful for Steve's steady improvement, for the help you all are providing and for constant prayers, good wishes and the potential resources that continue to fill our in-boxes.

Preliminary results

Dr. L stopped by this morning to check on Steve, discuss next steps and tell him the preliminary diagnosis.

The pathologists believe the lesion is an astrocytoma, the kind of tumor we discussed last week. They believe it is a grade 3 or 4 tumor (with 4 being the most aggressive). We will learn the definitive results when we return for appointments next Friday.

In general, grade 3 is treated with six weeks of radiation therapy followed by chemotherapy. Grade 4 is treated with radiation and chemo concurrently.

Steve's body is still reacting to the biopsy. The left side of his face is almost completely back to normal. He has experienced numbness on the right side of his face. He has lost the ability to taste well -- he can't really distinguish flavors. (His sense of smell doesn't seem affected, though.) Dr. L strongly suspects that all the pain Steve experienced yesterday during biopsy was related to swelling and irritation around the fifth cranial nerve, which might explain at least the numbness he's having now on his right cheek.

His vision is still double, but wearing the patch has helped his orientation some. (And it gives him a good excuse to say "Arg!" frequently.) His head aches, and not just in the lower back of his head as before. There are those healing holes from the biopsy plus wounds from where the halo was screwed into his head.

He was removed from most of the lines and monitors this morning, sat upright in a chair for a while and walked around the nurse's station with help. He relished sitting in the chair, taking pressure off the back of his head.

The current plan is for Steve to stay another night on the neuro floor. If he's doing well tomorrow, he'll be discharged. We'll stay a night at the hotel attached to M.D. Anderson, allowing him to rest, then drive back to Dallas Sunday morning. Jayshree will drive with us and will fly back to Houston that night.

Then, we'll return to Houston Thursday night and meet with doctors Friday morning -- follow up and suture removal with Dr. L, treatment plan with Dr. C and a visit with a radiation oncologist. We hope to be back home Friday night.

Radiation will need to start as soon as Steve's sutures are healed.

We are all struggling with the news. When you look at Steve, you just can't believe that there is an awful tumor growing in his brain stem. With the help of the steroids, he has been working, taking care of and playing with Cooper and Katie, washing dishes, walking Margie. We are greatly encouraged by all of that, by his excellent lifestyle and health (tumor notwithstanding), by his inspiring attitude and outlook, by the resources we've had available, by our faith, by your faith, by the stories of beating the odds and by news of miracles.

Even though we're a few hours from home, we've never felt alone, enjoying the company of Jim, Betty and Jim, Shauna, Swati and the nice people we've met along the way.

In review:
1. Steve is feeling relatively well considering everything he endured yesterday and the news he received today.
2. Pathology says the cells look like an astrocytoma, either grade 3 or 4.
3. Steve should be discharged Saturday. We would drive home Sunday.
4. We'll return in a week for follow up, official diagnosis and treatment plan.

In recovery

Steve is resting after his long ordeal. He's in room P803 in a special neuro unit that is a step down from ICU.

It seems as if all of his motor skills and functions are intact. There is significantly more drooping on the left side of his face. I'm not sure if that's permanent or temporary. It's certainly an insignificant side effect. His double vision is significantly worse. He's asked for a patch to make having his eyes open more tolerable.

The procedure was the longest biopsy Dr. L has ever done, he said. Once again, Steve is showing us how unique he is.

Everything began well. They entered his skull from the back right as expected. The wire was going in and was about 15 mm from the lesion when Steve began screaming in pain, saying that he felt something in his head. (He was sedated but not completely under.) Dr. L said that has never happened to him in thousands of biopsies. The brain itself has no pain receptors.

So, they backed out. They studied the MRI scans. They saw nothing that was blocking the path -- no blood vessels, no membrane, no nerves. They tried again. He cried out at the exact same spot. They made a different incision site in the same area and followed the same trajectory. He experienced the same pain.

They stopped altogether and sedated him more. They took him back to imaging for another MRI. They wanted to be sure that he hadn't moved within the halo or that they hadn't missed something. They found nothing remarkable on the MRI.

They returned to the OR and worked on a different trajectory. They considered coming in from the front, as we'd discussed last week, but the doctors couldn't get a good path. They instead decided on the back left as an entry point.

That was the way to go. They found a pain-free path and removed three tissue samples.

The whole experience lasted about five hours.

Because of the multiple incisions and complications, they'll probably keep him for two days instead of the standard one.

Steve is eating dinner now -- his first meal since last night. His dad and I are in his room. Betty and Jim have left for dinner. We're taking shifts so he's never alone.

I am relieved beyond description that he came out of the biopsy in such good shape. I am broken hearted that he experienced such excruciating pain. I am further convinced, though I didn't need convincing, that I am married to the bravest, strongest, most amazing man.

Surgery is over, no real results yet

The rounding nurse just told us that the biopsy itself is over. They are closing the entry point, removing drapes, waking him up from the partial sedation. Dr. L will help Steve get settled in ICU and then visit with us.

Still waiting 2

It's been more than an hour since the nurse's rounds. We still haven't heard from Dr. L. Can you tell that my anxiety level is rising? We're taking lots of deep breaths and saying lots of prayers.

Still waiting

A different OR nurse is making her rounds. She reports that Steve is still in the OR and is doing well. She can't predict how much longer he'll be in surgery or tell us how many tissue samples have been removed.

New time

An OR nurse just visited with me. The surgery didn't actually begin until 9:10 a.m. When the nurse was making rounds at 9:45, there was still no tissue removed.

We don't expect to hear anything until 11:50 or noon.

In the OR

Dr. L's nurse just stopped by. She said that Steve did really well with the halo and MRI. He was wheeled into the OR about 15 minutes ago. The procedure will take about two and a half hours.

In the waiting room

I had hoped to spend more time with Steve this morning, but I've already been dismissed. When I left, Dr. L was preparing to fit the halo. Nurses will make rounds about every two hours but probably won't provide much information. Dr. L will visit with us (me, Jim, Betty and Jim) when Steve's out of the procedure.

I just spoke with Ami, Cooper and Katie, who all sound cheerful this morning. Ami drove in from Austin late last night. I left before she arrived, so Julie came over to help me pack and stay with the kids.

Liz was a great driving partner last night/this morning, taking the wheel for more than half the trip. We just couldn't do this without all of you!

There are public computers in the waiting area, so I can type more quickly than with the Blackberry. I'll update as I have information.

In pre-op

Steve is in a gown, lying in a hospital bed, waiting for the next set of instructions. He's telling me funny stories and making me laugh.

I'm using a Blackberry for blogging, so posts may be brief today. My sleepy fingers are slow!