Tuesday, February 17, 2009

Today's news: Detailed version

Larger mass
The Damm Spot is a little bigger. When you compare today's non-contrast image with January's non-contrast image, you can see that the mass is a little bigger all around.

What can't be determined from the MRI is why the mass is bigger. It's either because of inflammation or new tumor cells.

Either way, the CPT-11 (chemotherapy) is no longer doing its job. It is either causing too much swelling or it's no longer effective in killing cancer cells.

Steroids
Steve has been taking 5 mg of Decadron, the steroid that addresses swelling in the brain. Beginning today, he's taking 10 mg.

If the mass is larger because of inflammation, a doubled dose of Decadron should take care of the swelling and should therefore take care of the related symptoms.

By tomorrow night we should have a good idea if the increased dose is working. If Steve has markedly better mobility and stability, then we can assume that the larger mass is because of inflammation.

If his symptoms don't improve, we can assume that new tumor cells are to blame. If that's the case, he'll drop back down to 5 or 6 mg of Decadron. There's no reason to keep him at the high dose if it's not helping.

Avastin
The contrast images from today, compared with the contrast images from early January, show that Avastin is doing its job.

The images show that there is no bleeding in the brain. Avastin is helping to stop blood vessels from leaking.

New chemotherapy
Because CPT-11 is no longer effective, we need another drug.

Dr. M recommends using Carboplatin in conjunction with Avastin. Carboplatin attacks the cancer cells differently than CPT-11.

The dosage is different than CPT-11. Carboplatin is given every four weeks, instead of every two weeks.

So next Wednesday, Steve will receive Avastin and Carboplatin in the infusion center at UT-SW. Two weeks later, he'll receive just Avastin. Then on March 20, he'll have an MRI to check the progress.

In general, Carboplatin doesn't show response as quickly as CPT-11. So if we're relying on chemotherapy, instead of steroids, to improve Steve's symptoms, we may be waiting a few weeks.

There is a chance that this protocol will change before it begins. Dr. M will consult with M.D. Anderson in the next few days to make sure that everyone agrees that this cocktail is the best option for Steve.

Low counts
Steve's hemoglobin count is too low, as indicated on lab work today. The low count is contributing to his severe fatigue (and causing his skin to appear grayish white).

Wednesday we'll report to the UT-SW lab at 11 a.m. for another round of blood work. Then we'll go to the transfusion center, where Steve will receive two units of blood. That process will take a minimum of four hours.

His white count is also low. If it's still low tomorrow, he'll probably also receive Neupogen injections until the count is at an acceptable level.

Many of you have already asked if Steve needs blood donated. I don't think he needs any specifically for tomorrow. I will ask if your blood donations can be credited on Steve's behalf.

(We joked this afternoon that he's always been a giver, not a taker, when it comes to blood. He was a faithful blood donor before his cancer diagnosis.)

Thrush
Yes, his old "friend" thrush is back. His mouth and throat are coated with signs of yeast, a side effect of the steroids. He started an anti-thrush medication today.

Laryngitis
He also has a mild case of laryngitis. His voice is at a whisper today, partly out of self defense. If he talks too much or too loudly, his coughing fits return.

Clear chest X-ray
The chest X-ray revealed no signs of pneumonia

Other good news
Dr. M says today could have been much worse. There are no signs of bleeding. There are no new tumor areas.

We love to celebrate these moments! On the way home, we stopped at Sprinkles for cupcakes for us, the kids and Jim and Betty.

Swollen foot and hand
Steve's entire left side seems to be suffering from poor circulation, a result of his decreased mobility. We did have a home health physical therapy evaluation scheduled for Wednesday morning. That's been rescheduled for Friday morning.

We hope that the physical therapist will be able to advise modifications and activities to help cope with the left-side troubles.

Awesome parents and grandparents
Jim and Betty visited UT-SW this morning, and we were able to see them between tests and appointments. Then they arrived at Katie's preschool in time to see the President's Day parade and to take her home for a nap. Betty walked to Cooper's school to pick him up. Then they helped all afternoon and evening -- grocery shopping, cooking, kitchen cleaning, laundry folding, playing, reading. They are superheroes!

How we're doing
Steve is as tired as I've ever seen him. His spirits are definitely flagging. Who can blame him? He's in discomfort (on top of everything else, he slept poorly last night and had back spasms throughout the day), his body is lacking all the blood it needs, the Damm Spot is bigger for reasons unknown, he can barely walk or talk. (Plus he experienced an awful morning with the MRI technician. That story will have to wait until tomorrow.)

But still, he's the same sweet Steve with a biting sense of humor and quick smile for his family. I expect that he'll start feeling better after tomorrow's dose of blood and with the steroids that are going to work!

I am tired, too. There is so much pain involved in watching your one true love suffer and struggle.

Still, I am so blessed by your constant outpouring of love. I never lack for someone to talk to or cry to or laugh with. I'll have to hug dozens of people a day for the rest of my life to pay back all the hugs I've received!

Mostly, I am thankful for Steve. I want to share something I wrote about him almost three years ago, in response to an e-mail from a dear friend:

Steve makes me feel valued in just about every possible way. He is my biggest fan, offering praise when I don't think I deserve it. He keeps my bedside table stocked with chocolates, so I can have a treat whenever I want. I get embarrassed sometimes by the way he dotes on me in front of others -- he brags on my accomplishments and makes me sound like a wonder woman. He constantly gives me credit for where we are in our lives -- Cooper & Katie, his career, our home. ... I could write an entire essay on this topic. I really am lucky!

5 comments:

Tracy Kosofsky said...

Big hugs to everyone - we're hoping that tonight brings a decrease in symptoms!!!

Nancy said...

We're all blessed to experience the rivers of love that have flowed through this pain ... Truly it knows no bounds. Sarah's and my thoughts and prayers are with you all. -- XXOO, N.

jhuckaby said...

Everyday your family is in my thoughts and my prayers. I feel so blessed to know you, and so thankful for what knowing you has meant to me and my life. I feel guilty even thinking it, taking your love and advice and friendship and holding so close to my heart. You're such a wonderful family, and my prayers are with you all every moment of every day. I love you dearly, and pray for your incredible strength, passionate resilience, and steady upward motion to every backward symptom. My thoughts and prayers are with you. All my love. J.

Mel and Vera said...

Tyra...
Eons ago when you arrived in Lubbock, a bouquet of flowers showed up, sent by your former employer. You just couldn't understand why a boss you had left would send you flowers. Well, there are a lot of former bosses out here who feel that way about you and Steve. In reading the bottom of your last post, it is clear that Steve knows how blessed he and the kids are. And clearly you have someone who "deserves" you.
Sorry, no flowers at this moment. But plenty of prayers are up and here are some electronic hugs for when you need them.... () () () () () ()

Chitnis and Chahal said...

Tyra, sending a hug and good wishes your way. Hang in there. You are a trooper and so's Steve.
I just sent him a text message.
I am thinking of you guys.
Love to Cooper and Katie.
Shilpa