Tuesday, March 10, 2009

Good news updates

Last night was the first time since my surgery August 4 that I felt like my left leg was completely "normal" even though there is still scar tissue around my incision. Up till now I've felt like my calf muscle hasn't been able to stretch out fully, and it feels most "contracted" at night. The lack of tension in my leg last night was a surprisingly sudden and noticeable breakthrough in my physical therapy on Monday. My calf in general has been feeling much softer than it has in a long time, and the area around the scar doesn't hurt like it did for a while. ASTYM, the technique my therapist has been using is just amazing!

I went downtown to Crawford Long Hospital yesterday for my 3-month post-radiation checkup with Dr. Godette, and she told me that I won't have to come see her anymore unless I feel I need to, since any relevant news from my 3-month checkups with Dr. Oskoui is shared with the rest of the team in their weekly "sarcoma conferences." That was also good news since the trek downtown is ~45+ minutes each way. I also requested (of a nurse, a resident AND Dr. Godette) that they please ensure that my diagnosis is entered properly on the records! Hopefully they will remember....

I've lost 5 pounds since Ash Wednesday. That's all the good news I have to share for now! It's been a great start to the week!

Thursday, March 5, 2009

Healing progress

Long time no post! Things are kicking into high gear now at work, but I wanted to post a little update that as of Monday, March 3 I finally have no more scab on my leg. I finished radiation Oct. 23 and I couldn't stand it anymore. After taking my shower the other day, I was able to lift up the edges enough to trim it down to a thin strip, which lifted off without tearing the skin. (I wouldn't have risked that--it took so long to heal, I dread the thought of what will happen if I ever scratch or injure my left leg on something. So my leg is now wound-free for the first time in exactly 7 months. (I had surgery on August 4, and then the radiation fun began--see photos by clicking on the links at the right if you really want to get an idea of what I went through.)

I'm also livid that I got my medical reports in the mail and they STILL have my diagnosis listed as "synovial sarcoma" on both my CT scan and my visit with Dr. Oskouei even though I have gone to extreme lengths since August 20 of last year to have that corrected in all of my other reports done since then. My CORRECT diagnosis is "high grade, undifferentiated (NOS-not otherwise specified) sarcoma." Dr. Oskouei told me they ran over one million dollars worth of tests to EXCLUDE synovial sarcoma (a really bad one) and I DO NOT have that.

Further, my CT report of my lungs says "purpose of exam": CHEST PAIN (in all caps!) NO, the only chest pain I have is from reading the errors in these REPORTS!!!! ARRRGGGGHH!! I made this appointment 3 months in advance, and have never had chest pain. It's just my regular 3-month checkup required of all sarcoma patients for the 1st 2 years (at which point it goes to every 6 months up to 5 years, then once a year though 10 years.)

This CT says I have a "moderate sized hiatal hernia." Funny, the last one with contrast in November didn't show anything. Did I all of a sudden develop a hernia since November? Whatever. The only reason I know this is actually my scan is because it mentions the two small nodules (whatever they are) in my lungs which have remained stable in each scan, thank God.

Also, there's no mention of the "lung cyst" that was present in my other two scans, so either they missed it, or it went away, which I hope is the case. But the massive number of errors I've found give me a great deal of concern since I am in the critical phase of when both recurrence and metastases are most likely to happen. I'd really like my records to be correct every time without having to jump through hoops to ensure that they ARE correct.

Anyway, it's nice to have ALL skin on my leg now, even though you can tell there was a wound there since it's still kind of red.

It snowed in Atlanta on Sunday, and I'll post pictures next time. My cousin Cathy had to overnight in Atlanta Monday night on the way back from BWI to New Orleans, so we had lunch on Tuesday. I don't think we'd seen each other since our grandmother Mimi's funeral in 2002.

Gotta run for now. Have a blessed Lent!