When "Normal" Is Anything But
I wrote a new blog entry yesterday while Bryan was taping a podcast with Adam Carolla, but realized it was way too hard to concentrate on typing when Adam is ranting about "The View" ten feet away from you. I gave up on typing and gave in to laughing instead.
Today, I'm now sitting in Bryan's PT session (it's a lot quieter than the podcast!) while he's having his toes, ankles, calves, knees, quads and hips challenged. If you thought you had a tough "everyday" workout, try isolating every single muscle in your lower extremities and retraining your brain to move them. We can easily spend half an hour just trying to get Bryan's toes to bend slightly (we're one for five). The brain has to get the message to the muscle, and that can take hundreds of reps just to even feel a tingle or get a tiny percentage of the message to the muscle. These physical therapists have the patience of saints; I tell you. Thank God they do what they do, because it's working.
Occupational therapy is the same way. We've spent countless sessions just trying to get the message from Bryan's brain to his left fingers to wrap around a drawer hinge and pull out the drawer. But that also requires the shoulder and elbow to work, so it's another level of brain messages to the muscles. He's working on picking up quarters, Q-tips and cribbage game pieces with his left fingers and placing them in a container one foot away. Again, that involves muscle memory from muscles other than the fingers and hand, so it becomes more complicated.
The fact that Bryan's tumor shrunk is amazing, but he said to me the other day, "the fact is I still have a brain tumor."
Yes, he does.
We're incredibly buoyed emotionally by the shrinkage (this is one time when shrinkage is a good thing), but the truth is that right now we've got to work harder than ever.
We're nowhere near a normal life. If you count hours and hours of daily therapy, monthly chemo drama and bi-weekly Avastin infusions at the cancer center "normal," let's try trading lives for a bit. Bryan and I would happily give this up to go back to work and a normal life. When going out to dinner a few times this month so we can actually get out of our apartment and feel more normal, it's still not a normal experience.
It's not normal to help your husband walk out of the apartment, take a few extra moments to practice his fingers wrapping around the doorknob to close it, get him situated and balanced while I lock the door, help him down one step, and then start to sloooooowly walk down the driveway to the car. Then I help him into his seat, close the door, and go around to get in the driver's seat.
We haven't even left our driveway., mind you. And usually wives don't drive everywhere, either.
When we get to the restaurant, it's not normal to search for a handicapped parking spot, run around the car, help Bryan out, make sure his footing is secure and balanced, focus on the quality of each and every step towards the restaurant door, navigate any steps (steps are a huge challenge) and finally get to the DOOR of the restaurant.
Need I say more? We haven't even walked to the table, ignored the stares of strangers wondering what's wrong, focused on clear speech for ordering, gotten up to the bathroom, etc.
And then there's the yucky, yucky, yucky chemo that Bryan does five days a month. It might as well be two weeks a month because it pretty much knocks him out. The next round of the chemo is right before the fundraiser, so we're hoping he bounces back especially quickly.
An article I read yesterday summed up the effects of chemo on the body perfectly: "Chemo attacks healthy cells while killing bad cells." Since Bryan's chemo is a very high dosage - 400 milligrams daily - it definitely has a big effect on his body. About two days into the chemo I noticed that Bryan was really fatigued, about three days in I noticed he was starting to slur a little bit again, and by day four I noticed that he was having trouble walking and balancing again.
Now, the impact on his functionality was not much compared to a few months ago, but I still got a lump in my throat and a knot in my stomach seeing ANY decline whatsoever in my husband. I think I'm so sensitive to it that to be honest with you, I feel like I've got a version of PTSD from everything I've experienced and seen over the last seven months. But that's a blog for another time.
Bryan still did physical therapy during his chemo week, and our therapists could tell he was fatigued. They were incredibly impressed, however, that he's not throwing up during his sessions. Sorry to be gross, but chemo is a poison so people obviously get incredibly sick while on both the pill and infusion form. The therapists spoke too soon, because that night Bryan started feeling queasy. We doubled up on his Zofran (anti-nausea) and hoped that would work. But throughout the entire week, Bryan was queasy in addition to feeling fatigued, off-balance and slurring a bit.
Bottom line is, chemo sucks. But it's working, so we'll do it once a month for up to two years. That's a LONG time.
We've got occupational therapy tomorrow and then Avastin infusion on Friday, so that's another few hours at the hospital.
The fact that we've been so incredibly excited to focus on something OTHER THAN CANCER and post short entries updating people on the fundraiser is a big deal to us. We can't wait to say thank you to everyone who's sent their love and support to us live and in person.
PT is done, so it's time to go. More blogs to come, and we hope to see you on 11/20!
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