Excerpt from the chapter from my 1st book Reversal: When A Therapist Becomes a Patient, “Time after Time”
The following are journal entries/ blogs after I got discharged home. I had just started outpatient physical therapy, occupational therapy, and speech therapy as well as my radiation therapy sessions.
Wednesday, December 14, 2005
Met with the radiation oncologist today and had my 2nd day of outpatient therapy. Looks like I’ll be discharged from outpatient speech on Monday. PT is going well; hopefully I’ll be walking more independently in a few weeks so I can get out if this wheelchair. Damn you ataxia!!! I’m trying to type with 2 hands today. Man, so many typos… Anyways the meeting with the oncologist kind of freaked me out. There is a small chance something can go wrong… that means there is still a chance! Based on the location of the tumor remains… the brainstem is still at risk…. Scary.
There is also a chance the tumor might come back. Either everything I’ve been doing so far will eradicate the tumor, or postpone the return of the tumor/symptoms a few more years. Jeez… what great news. It’s the doctor’s job to inform me of all possible outcomes, but I wish I was more prepared for this. I keep reminding myself those are worst case scenarios.
It didn’t help that both of my parents looked scared while we waited for the oncologist. The biggest side effects will be severe fatigue and hair loss. I say “Bring it”! Fatigue gives me an excuse to eat more junk food, and my hair is short anyways. I think I’ll definitely need some prayers now…. I was not as prepared for this doctor visit.
Friday, December 16, 2005
Radiation starts 1/3/06 and will go on for 6-7 weeks. I also got fitted for my radiation mask today. The mask will keep my head from moving during treatments.
Tuesday, January 03, 2006
Today was my first day of radiation therapy, and no I didn’t see any radioactive spiders or anything…. Some of you might get that. Anyways it wasn’t as bad as I thought. Took about 20 minutes total. It is a little claustrophobic lying in “the Cave” and being strapped to the table. The mask that I have to wear gets strapped to the table and is snug/tight as hell. It’s made of a plastic mesh so I’ll always have lines on my face after each session. I don’t know if I was dreaming, but I swear I smelled burning or something during the session. Maybe they fried something (hopefully the remains of the tumor) I actually fell asleep during the session. The facial expression on my mask kinda looks like Han Solo in the carbonite… my mouth was a little open when they fitted me for it. I didn’t do it on purpose, but with the added pressure to my lips, the mouth automatically opens. This probably explains the physics for French kissing… ha ha ha!
Anyways, I am trying to walk more at home… still have difficulty with the ataxia in my L arm and leg…. I can’t wait to get out of this wheelchair… running the race in April might be a long shot but it’s something to aim for… The tomotherapy will probably cost me some fatigue and some hair. I am starting to get really bored at home… I’m usually in bed by 10 PM.
Thursday, January 26, 2006
I’m starting to shed/lose hair. My hair is gonna be patchy but I won’t lose everything. I think I only lose hair where the radiation enters my head. It doesn’t hurt at all. The hair just falls out, no pain at all. It kinda looks like my dog Mercury’s fur shedding. Maybe if I was a girl, I’d freak-out a little more. Luckily my hair is really short. The radiation therapy makes me really tired, wipes me out for at least an hour after each session. Today I was able to walk from the car to the waiting room with the walker. I can’t wait till this is all over…
Wednesday, February. 8, 2006
Whoa… it’s been a while since I’ve updated this thing. I’m hanging in there. This past week has been kinda tough. The radiation is finally starting to take its toll. I caught a little cold last week so I’m gonna lay low for a little while. I’m kinda bummed ‘cause I still need that damn wheelchair, but I’m getting around much easier with the walker. I wish I would wake up one morning and everything would be better. Too bad it doesn’t work that way. I continue to make improvements, but it’s not happening as quickly as I would like. Maybe after radiation is over, things will be more “normal”.
I’ve always dreamed big. But I’m starting to have doubts about that race in April. I literally have to walk before I run. Dude, I can’t wait for this to be over. The doctor said 6 months to a year.
Tuesday, February 14, 2006
Radiation is now officially done!!! They gave me a certificate and a hug to boot. I kept the “mask” by the way…I don’t know why. They’ll make me a new one if I need to come back. I get another MRI in 3 months and follow up with the docs in one month
Now I can just focus on walking. I just started walking in the parallel bars without a walker or cane. I’m getting rid of the wheelchair going to my remaining appointments on Friday though I think I’ll still keep it around for longer trips
Also just found out one of my friends from PT school secured tixs for the Pistons-Lakers game @ the Staples center. Hopefully I’m on a cane by then. Oh yeah, even though radiation is over, I still don’t like Valentines Day.
I have to follow up with the oncologist every 6 months to monitor what’s left of the tumor. Anyways after radiation ended, I was in for the long haul… I had one more “stop” before going back to work. This is where my patience and will would really be tested… continued Outpatient therapy.