"There is hope! Finally, hope!
And no, this isn't over
No, we aren't through!
No, there's still a million things that you and I can do!"
(Lyrics from the Broadway musical Parade)
Just after we took flight this afternoon to leave the Houston area, I pulled out my iPod Shuffle. The first song was "This Is Not Over Yet," from the Parade soundtrack. Steve and I saw the musical about seven years ago, when I was pregnant with Cooper. We both love the story and the music.
The main character sings the song when he learns that he has a reprieve from the death sentence for a crime he didn't commit. He and his wife are celebrating their extended time together.
I found special meaning in the song after our visit at M.D. Anderson today. The news was about as good as we could get.
The MRI scans show that the tumor is about the same size as in January. It didn't grow! And there is necrosis -- a cluster of dead cells -- in the middle of the tumor. Water has filled in that spot. (New brain cells won't grow there.) Dr. C says there's no way to know if it was the radiation therapy or chemotherapy or both that punched the hole through the tumor. In addition, there is less edema (swelling) around the tumor now as compared to January.
Dr. C was optimistic about the treatment so far and has recommended some additional tools to fight the Damm Spot. Dr. C's plan is designed to keep the tumor at its current size -- making it smaller would be an added bonus. (But don't let that stop you from praying that the tumor will altogether disappear!)
Next week Steve will again start taking Temodar, the oral chemotherapy. His dose will be twice as strong as his first round. He'll take it each night for seven days, then take seven days off. That cycle will continue for 12-18 months. With that, he'll continue to take Zofran to fight nausea, an anti-pneumonia drug and an anti-malaria drug, which may help deter cancer cell growth because of its antimutagenic properties.
Steve will also start taking a high dose of Accutane, usually prescribed for acne. Accutane in high doses somehow turns off and on whole sets of genes in tumor cells and makes those cells behave more normally. It can be effective in working against cancer stem cells, which are resistant to chemotherapy and radiation, taking away their leadership qualities or "stemness," as Dr. C says.
We learned the possible risks of Accutane, including extremely dry skin, lips and mouth; pancreas and liver problems; increased triglycerides; and depression. Steve will need to moisturize from head to toe every day and stay covered in the sun. (If you suffer from dry skin and have a recommendation of a lotion or moisturizer that works for you, please let us know!) He'll also have his blood checked monthly for internal changes.
Steve has been taking acetaminophen almost nonstop since November to address the headache at the back of his head. Dr. C suggested he try Diamox, which can reduce the production of spinal column fluid and may reduce some of the pressure he feels on the back of his head. If it works, Steve may be able to give the Tylenol a rest for a while.
This drug is prescribed for patients with narcolepsy or sleep apnea. It could also help Steve fight the fatigue that he's been struggling with. This is an off-label use that insurance companies aren't willing to finance; the drug costs $360 for a month's supply. A 2006 study showed that it dramatically improved quality of life for brain cancer patients. We don't have high hopes that our insurance will cover an off-label use for quality of life purposes.
In addition to blood work and an MRI, Steve discussed with Dr. C and his nurse his current symptoms, including:
His right eye doesn't function as it should, so he has double vision to the right and straight ahead. Dr. C is not hopeful that this will ever repair.
As Steve is again backing off the Decadron (down to 2 mg daily), he's noticing some left-side weakness again. It would be best if he's off the Decadron altogether, but he may need to stay on a low dose to retain functionality.
Sweets no longer taste good. This is probably because of the chemotherapy and/or radiation. I think it's his body's way of reminding him to avoid sugar -- tumors love sugar.
Steve still has no gag reflex, which keeps him at an increased risk of aspiration. He must continue to thicken liquids for safety.
We'll meet with Steve's neuro-oncologist in Dallas this week to review the M.D. Anderson plan and establish routines for checking blood counts and other vital signs. (Dr. M here frequently works with Dr. C there via phone and e-mail.) The next MRI will be in about eight weeks.
As we were landing in Addison this afternoon, at the end of a smooth flight, another special song started on my iPod. It was our first-dance song at our wedding, almost 14 years ago. (We will both tell you it's much too long to be a first-dance song!) It makes us both weepy and happy at that same time. It makes us want to dance in the kitchen or family room or wherever we are when we hear it. I shared my headphones with Steve, and we held hands until it was time to leave the plane.
"Was there life before this love
Was there love before this girl I can see
Was there ever love for her before me"
You can count on me to stand and say
'Was there ever life before this wonderful day?' "
(from Pete Townshend's "Was There Life")