Music to Our Ears

Last week was another emotional blockbuster, but happily there is good news to report.

First of all, Larry's memorial service on Tuesday was attended by over 300 people. It filled two auditoriums at the School of Public Health. It was a beautiful program in which Larry's colleagues and grad students paid tribute to him as a scientist, colleague, and mentor. Jon, Carl & Ilene also gave beautiful remarks. The service came at the end of a long day during which Matthew had to undergo a three-hour PET scan, the first of a series of post-treatment "restaging" studies. In the middle of the service, I saw our oncologist's number flash on my phone. I waited until the end to call him back, my heart in my mouth.

Thankfully, the report was good. It was the first of several tests that week, including a brain MRI, an abdominal CT scan, a spinal tap, and blood tests. Each day another test, another period of interminable waiting, another phone call. Somehow, we got through it all without flinching. Finally, on Friday afternoon, I received the call saying the last tests were clean. We had made it through the first gauntlet. Our sense of relief was enormous, but tempered by the knowledge that this was only the first of many checkpoints to come. Next week, there will be another test for tumor markers - and every week thereafter for the foreseeable future. Each time we will hold our breath; and each time I will freeze when our doctor's name appears on caller ID.

***

As I started to write this, music was coming from the next room. Matthew was playing a Dave Matthews tune on the guitar and singing along: "I am no Superman. I have no answers...for you." This would be unremarkable except that he has not picked up the guitar or sung for several weeks...since the second round of high-dose chemo left him with mild to moderate hearing loss in one ear, moderate to severe loss in the other.

Just days before heading into the first transplant, we learned that a common side effect of one of the chemo drugs is hearing loss. The loss could be mild or severe, but most likely irreversible. It seemed impossibly cruel and unfair that Matthew might lose the one comfort most important to him - his music; but we had to accept that risk since there was no alternative to the treatment.

A couple of weeks into the first transplant, we tried not to panic when Matthew reported feeling one ear blocked. The effect seemed to be more pronounced in one ear than the other, so we held onto a foolish hope that it was only earwax until a hearing test just prior to the second transplant confirmed that there was a degree of loss in both ears. Terrified, we entered the hospital for the second transplant, knowing that additional loss was likely. Would he wake up one day unable to hear at all? We held our breath and tried not to dwell on this possibility.

After the second round, it soon became clear that his hearing had worsened. He could no longer hear us unless we faced him and spoke loudly. A second audiogram was scheduled while Matthew was inpatient. It was emotionally wrenching to sit next to him in the testing room and watch him miss one word after the next. That night he tried valiantly to sing and accompany himself on guitar, before giving up in frustration. Later that night, he wrote a powerful poem with the ironic refrain:

The notes are bad, bent out of key,
but it sounds fine, just fine to me.

In the next couple of weeks, Matthew worked hard to adjust to his hearing deficit. We purchased a small amplifier from Radio Shack, which helped a lot, and he also started reading lips. Talking to one of us or working with a tutor one-on-one wasn't a problem. However it was definitely hard for him to follow a conversation with more than one person talking.

This story ends on a happier note literally and figuratively. Before leaving the hospital, Matthew was fitted for tiny hearing aids - and just last week, they arrived. Their impact has been immediate and dramatic. Matthew sang all the way home in the car, the first time he'd sung in weeks. He chatted away at dinner that night and afterward went upstairs to play guitar. It's hard to describe what beautiful music this was to our ears. Hearing aids can't restore his hearing 100%, but they seem to go a long way.

***

We were all together in Baltimore this weekend - and we had a wonderful time. The latest word from our doctors is that we should be able to go home sometime next week. That will be nice.