Sunday, May 7, 2006

Here are some great photos of our friend Colleen who ran the Brain Tumor Society's 5K this morning in DC. In the words of C's girlfriend, my lovely friend from grad school, Tresa, "Colleen did the 5k this sunny crisp morning in our nation's capital in honor of mike. It was quite a thing. You would've loved it. Very emotional and really healing for all these people."

Today was not a great day at the hospital - so seeing these photos helped me gain some perspective.

I was with Mike for a few hours this afternoon at the hospital. It was a quiet day there - no visitors - unlike yesterday when he had a whole parade of fun folks. He hadn't eaten much lunch and looked a little down when I got there early afternoon. His voice was weak and I could sense his chest was congested. I tried to get him to cough, to clear his throat and lungs and he could barely muster a quiet cough. Even after lots of prodding and encouragement, all I got was an "a-hem." I'm worried about his lungs. If you're in to see him, please ask him to take a few deep yoga breaths - the kind where you breathe way in, hold it, and then exhale very slowly. He has that stupid bong-like gadget on the windowsill next to his bed that's designed to give him a lung-workout, and you think he'd enjoy it, but no dice.

After a half-hour, I called in a nurse to help clean up an accident. Mike looked at me and stuck out his bottom lip. When I asked what was the matter he told me that he was sad because he was embarassed that it had happened. I told him it wasn't his fault, that he had a big cyst pressing into his brain that was preventing his brain from communicating properly with his body and that after the cyst was drained he'd be better. He said, "good," and closed his eyes.

When the tech, Christina, came in to help clean Mike up, we decided to wash his whole body and change his gown. While she was getting things ready, I had Mike drink some protein shake, Boost. Then, right as we were about to start cleaning him up, he made a terrible face. I asked if he was going to vomit and he said no. I asked if he was sure and he said yes. And then he immediately started vomiting. But he's so f*cking weak, he couldn't even lean forward. It was horrifying. I crumbled out of sadness and anger.

Cleaning him up, he seemed like an old man to me. Shivering, pale, almost blue in his hands (from IV bruises) - and his muscles have disappeared. His calves are so tiny now. I was overwhelmed by a feeling of hatred for this tumor. I hate it. Stupid f*cking tumor.

But, like I've written before - every day is different. Maybe tomorrow will be better. Maybe the radiation is making him feel gross and tired. And Wednesday is our big sit-down with Evans where we get the plan set and review his approach and contingencies.

To end on a good note - I asked Mike today if he remembered seeing Baxter yesterday and he said, "yes." To verify, I asked where he was when he visited with Baxter and he replied, "Out in the hallway." True true. Holy shit. Baxter actually stuck.

And finally - tonight, after dinner, I was down on my hands and knees on the kitchen floor, wiping up the mess that had "fallen" from Baxter's high chair and I felt a tiny person leaning on my shoulder and heard, "I luh you." He is truly making this shit tolerable. I swear. Thanks, Bax.


Mary said...

I just want to go on record and say Colleen rocks and Baxter is out-of-control cute. I'm sorry today sucked, sweetie. Love you.


Sand said...

Hey babe, have they changed Mike's antibiotics yet? that would also make him feel like hell. or if they haven't changed them, any infection he's fighting could make him feel really crappy too (the microbiologist's perspective..). there are so many things that Mike is battling all at the same time! i'm not surprised that the doctors are so 'hedgey' with their forecasts - between the possible infections, the cysts and the SFT, it seems impossible to say what 's causing any particular symptom.
you're both so strong. big virtual hugs from across the ocean. Sa

Diane C. said...

Dear Danna,

Definitely the radiation will make Mike feel tired. It's not well understood why this occurs with radiation, but it does for most people undergoing some form of radiation treatment. It goes away nicely after treatment is completed, though I'm not sure how quickly--I'm thinking a week or two?

francine said...

Hey Danna:
I'm certainly no expert, but from what I've read, it sounds like radiation really does a number on people, so I wonder if most of mike's exhaustion is temporary (due to the radiation). And I would think it'd be hard for him to control everything else when he's so tired. Just a thought.

Also, especicially in light of mother's day coming up, I think you should give yourself some major credit with Baxter. Hospitals are scary with all the strange machines and people and smells and noises, but it sounds like he did so well on Saturday! He just sounds like such a happy, secure, confident, and sensitive (empathetic?) boy! Despite all the things you and Mike are going through, you've kept him feeling happy and safe. :)

Anonymous said...


If your concerned about Mike's lungs you might want to check with his doctor to see if Mike can get chest physiotherapy. All that means is that once or twice a shift, a nurse or tech will come in and paddle Mike's back (around the lung fields) with cupped hands for a couple of minutes. This helps bring up secretions if he can't bring them up himself. I'm not sure if this is contraindicated with his current condition/treatment but you might want to ask his doctor about it.

Thinking of you guys,