Saturday, August 15, 2009

One Year Cancer-Free

As of August 4, I'm one year cancer-free (but my radiation burns weren't completely healed till the end of FEBRUARY, and I didn't get my full stamina back until around Easter.) Just started a water aerobics class 2x/week since I finally have the time and energy to start exercising. With the help of physical therapy & ASTYM for 3 full months, massages as often as I can get them-1-2x/month, and occasional yoga (and now water aerobics) my leg is feeling much softer and the tightness/swelling has gone away. I'm very happy with how it feels right now, although my calf muscle still feels contracted more than I'd like. It's not bad, but it's annoying. I'm hoping that exercising will take care of that.

Things are getting busy at work now as we approach the singing season. We had our long-awaited first-annual music ministry mini-retreat last week, which was well-attended, and seven members of the children's/youth choir sang with me at the Assumption Vigil Mass last night (their first time to sing "out of season" since their rehearsals won't start till mid-October, a little later this year due to unavoidable scheduling conflicts.) Next week Bob (my assistant) and three cantors and I are attending the Archdiocese of Atlanta's second annual Southeastern Liturgical Music Symposium. The following week I'm attending the Confirmation retreat from Friday afternoon through Sunday, and adult choir rehearsals start up the following Thursday. Then it's the mad dash to Christmas. Bring it on!

Wednesday, June 3, 2009

3-month checkup results-CLEAN!! Praise God!

Praise God!! I'm still cancer-free (as of tomorrow it's 10 months.) Dr. Oskouei said that he "couldn't ask for better results" of my CT scan (of my lungs) and MRI of my leg today. They're both very clean. Thanks so much for all the prayers, everybody!!

Tuesday, May 12, 2009

3-month checkup delayed...

I haven't posted in a very long time since I've been on Facebook. I've been feeling good and so far, no sign of recurrence. I was due on May 22 to have my next 3-month checkup, CT of my lungs and the first MRI of my leg since before surgery last August, but Emory called last week saying they needed to reschedule me. So my appointment is now delayed 2 weeks, which I'm really bummed about. It will be June 3 now, and I'll post my results later that day. Till then, see you on Facebook!

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!

Friday, February 20, 2009

All right, already, I'm on FACEBOOK!

OK. Well, I finally caved in to peer pressure from (my sister) Valerie and my best friend/debate partner Michelle from freshman year in High School, to join Facebook. I've never experienced any peer pressure in my life except for this; it's like giving a jug of whiskey to an alcoholic. I knew it was gonna be trouble!! I have spent WAYYYY too long on there and MUST get my taxes done along with a bunch of other stuff before Sunday and then again before Ash Wednesday. I also stayed up till 4:30 a.m. the other day fixing my best friend's son's computer. Both Bill and I worked on it throughout the evening but it was seriously messed up with viruses, trojan horses, spyware, rootkits, and all kinds of nasty malware. I couldn't sleep later, got up around 1:30 and worked on it until I FINALLY got it cleaned at 4:30 and it should be OK now. I'm getting to be a virus-buster on peoples' computers lately! That's the second one in about a month I've fixed.

Had my 3-month followup with my surgeon, Dr. Oskouei today, and CT scans of my lungs (no contrast this time.) I was at Emory for over 3 hours....wanted to go see "Dialogue in the Dark" and/or the Bodies Exhibition at Atlantic Station before they end on March 1, but I called from the Emory parking lot after I was finished, and the tickets were sold out this afternoon until 4 p.m. for "Dialogue" (and nothing today for "Bodies.")

Anyway, my scans came out clean, praise God!! My next ones will be May 22: a CT (no contrast) of my lungs, and an MRI with contrast of my left leg (this will be the first one since before I had surgery last August.)

Other good news this week is that Bill's annulment was granted and he finally got the letter from the Archdiocese in the mail. I really don't know what I would have done without him during my health crisis last year. He has really been a sweetheart and a huge help to me.

My youth cantors (5th-7th grade) sing this Sunday at 10:30; we just started after Epiphany and I already have 14 members--we just picked up ANOTHER one on Thursday!! The adults will be at 8:30 for the OCIA Rite of Sending this week. We're excited to be able to sing Mozart's "Ave Verum" now for the 3rd week in a row--at 12:30 a couple of weeks ago for Deacon Joe Carter's first Mass after his ordination to the Permanent Diaconate, then last week at 10:30. I am so proud of them; they really did a great job both times so far. The Children's Choir has about 20 kids, the same number I had in the fall, which is FANTASTIC for the spring--I lost a bunch to other spring activities but gained a bunch, and I retained most of the ones who couldn't attend Thursday rehearsals this spring by forming the youth choir. (They just come 1/2 hour prior to Mass on their singing dates.)

I took some pictures of the adult choir at rehearsal last week and Glen is going to make a slideshow of them singing his setting of Psalm 146: Praise the Lord who heals the brokenhearted. We sang it at Deacon Joe's first Mass and they did a great job of that. Glen was really excited to hear it, and will post it on Youtube for us. That'll be cool.

The day before I posted my last blog entry, I took Sybil to the vet to get her vaccinations since she was overdue, and to also check out a bump on her tail that bothers her when you touch it. Other than that, she's not biting it or anything, but she hadn't seemed herself for a few weeks. She's better now, but the vet said there was a 50-50 chance it could be cancer at her age. It would cost >$500 to get it removed and biopsied, so I opted not to do that since her wellness exam, X-rays and shots cost $400 as it was (and I also had $900 of car repairs--new water pump, thermostat, hoses and belts and other stuff) at the same time. That's why I MUST do my taxes soon so I can get my refund!! Then I'll change my W2 exemptions soon so I can use my money throughout the year instead of Uncle Sam.

Anyway, I don't want to cause Sybil any undue trauma by putting her through surgery since the bump doesn't bother her. If I had the money I might be tempted to have the thing removed; I'd be relieved to find out it's just a cyst or something, but even if it IS cancer, I wouldn't opt to do chemo or radiation--that would be absurd to go through that enormous expense and put her through extra pain and vet visits at her age (14+--she was a ~2-year old stray when she adopted me in 1996, but I don't know exactly how old she is) . From what I've read, cancer treatments don't usually prolong pets' lives very much even when they work. So I hope my little kitten isn't in any pain. Her appetite certainly hasn't suffered! She eats like a hog but I love her so. She's so cute!

Other bad news I heard this week was that the small group of villains still causing trouble at St. James in Mukwonago WI succeeded in pushing Fr. Frank out of the parish. My friend Carol P. called to tell me he was gone all of a sudden last week "on sabbatical" and won't be returning. That is now the FOURTH priest they've done it to, and the second time it's happened to Father Frank since 2006. Please keep my former parish and the Archdiocese of Milwaukee in your prayers--they are in deep need of healing. Rumors are flying that Archbishop Dolan will be named Archbishop of New York very soon and he is on track to become a Cardinal. I hope whoever comes into Milwaukee next can clean up the mess that the pre-Dolan bishops created, and although I'm sad that Archbishop Dolan wasn't able to accomplish more there, I'm glad they didn't ruin HIS career; he seems like a very good man. What goes on between the parishes and the Archdiocese there is shocking and sad, and unless you live there, you wouldn't believe some of the corruption I've witnessed, in three separate parishes, and the disobedience to and disrespect for church authority on all levels is rampant. I am so grateful to be OUT of there.

Friday, January 23, 2009


I've been going to physical therapy for my leg three times a week since the beginning of January, and that is going really well; I'm SO glad I'm going. I can't imagine how many people suffer unnecessarily because their doctors don't refer them automatically. I had to ASK for it even though my surgeon knew I had been unable to bend my leg almost at all from August through all of November, and I have only been able to bend it 90 degrees since December.

My leg feels SO much better now, and even though a little tiny part about 1/4" x 1/4" is STILL not healed over, I was able to leave it uncovered even wearing pants for the first time yesterday without it burning. I slept without a hydrogel or other dressing on my leg for the first time last night since I had surgery on August 4! Woo-hoo!!

My therapist (Natalie) has been working on softening the scar tissue in my leg. She's doing something called ASTYM. I've only had two treatments of that so far but it has already made a world of difference! It is the most amazing thing I've ever seen since it doesn't seem like what she's doing would be enough to make any difference at all, but it DOES! (I go again this afternoon.)

After my very FIRST treatment on Monday, the tissue under the top part of my scar felt noticeably softer and after the second one, the whole thing feels almost normal.

Basically they just put cocoa butter on my leg and scrape it with this hard plastic tool, not even very hard, and not for particularly long. I don't understand how it works but I am completely amazed at the results. I'm almost positive this will help prevent the swelling in my leg when I sit or stand too long, and my calf is staying more "stretched out" now instead of feeling cramped up.

There's a video of what they do at the link below.

Talk to y'all soon,


Monday, January 12, 2009

Long pants!

As of last Wednesday, January 7 I am able to wear long pants again without it hurting. Prior to this, even a lightweight skirt brushing against my leg was uncomfortable (even with my thigh-high stocking over a hydrogel or non-stick pad covering what's left of my burn.)

January 7 was the first time since August 2 that I had even attempted to wear long pants, and I'm so relieved that I CAN now because it's getting COLD, especially at night.

Last night I slept in sweatpants for the first time since surgery, and am starting to feel back to normal now, even though I haven't attempted to wear heavier fabrics or less-full-cut clothes like jeans.

I also was able to put my light cotton blanket on the bed last night for the first time all winter. Again, because of my leg, I couldn't tolerate any weight on it, and from August through almost all of November I actually had to sleep with my leg on top of the covers first while my scar was healing and later because of the burns on both the back of my knee and the side of my leg.

Physical therapy is going well. Today I was able to scoot 2/3 of the way around the room on an office stool before stopping to rest, which was a marked improvement over last week when I could only go a few steps at a time without resting. So Natalie had me go around twice today, and she has added new things for me to do each time. Unlike PT for my shoulder in 2007, none of this hurts or is uncomfortable; I'm just terribly weak. I'm very glad I'm doing this in a formal way, however, because I'd never do it at home on my own and would probably hurt myself if I tried to just jump in and start exercising again.

Things are picking up again at work since choir starts this week and the kids will resume in two weeks. I've got a lot of scheduling to do before then, so that's all for now.

Monday, January 5, 2009

Happy New Year!

Well, my leg STILL isn't completely healed yet.... I have a stubborn little spot about 1/2" x 1/4" that just won't heal over.

However, the developments are as follows:

Just before Thanksgiving, I was supposed to have an MRI of my leg. That didn't happen. Instead, I had a CT scan with contrast of my chest, abdomen and pelvis, which came out clean (so they said) even though the written record shows a "lung cyst" and either a cyst or a hemangioma in my liver, and I found out I have uterine fibroids. They didn't TELL me any of this...I wouldn't have known had I not requested and paid for the records.

Anyway, I'm feeling much better since Thanksgiving, and my burn healed really quickly up to the point where it has been stuck since Immaculate Conception. Christmas went remarkably well considering how late I had to prepare for everything since I wasn't able to do ANYTHING much at all until Thanksgiving.

A lady from church (thanks, Maggie!) gave me a little kit of Burts' Bees products including some salve that contains comfrey and lavender. I started using that just before Christmas; the comfrey stimulates cells so that they repair faster.

When I went home to New Orleans the day after Christmas, Mom gave me some medicine she used when she had cellulitis. That helped within one day to reduce the inflammation and discoloration around my wound, and it has continued to help. Within a couple of days, it seemed like the wound was getting shallower (but still not SMALLER.) So the combination of the Burts' Bees and the medicine was helping to spur on some new healing since I was stalled for almost 3 weeks without any encouraging signs of healing at all prior to using these.

By the time I left New Orleans (Dec. 30) I was able to sleep without a pillow between my legs for the first time since the summer. Prior to that, it hurt a LOT if my legs touched if I tried to sleep on my side and if I put any pressure on the wound at all.

The other development since Christmas is that it doesn't hurt if I press around it or even on it (when covered.) Prior to even Christmas Day it hurt, especially in two little swollen spots on opposite ends of the wound.

Last night I put a hydrogel on the wound, and it stayed in place all day, even through physical therapy this afternoon, and two games of bowling with Bill and his son Will, whose birthday it is today.

So I guess my leg is healing deep under the skin, but it is taking FOREVER. The part that's left was right where I tore off the tape which made the original wound, and that's the same spot where the beams exited my leg, and I would have gotten the concentrated "boost" of radiation in my final week of treatment.

My next CT is supposedly without contrast, of just my lungs, in February. I'll finally have an MRI of my leg in May, but Dr. Oskouei said he wanted my leg to be completely healed before that since scar tissue can appear similar to tumor tissue.

I started physical therapy on Friday back at Benchmark Physical Therapy on McGinnis Ferry Road. They did such a great job with my shoulder in Fall 2007, I definitely wanted to go back there again. I had to ASK to get the prescription; they didn't automatically offer it to me. It's incredible to me that they don't prescribe PT for everyone who has not been able to have full range of motion in a limb for several months. It just goes to show you that the patient really has to be proactive about their own treatment.

I'm still tired from the "holidays" which for me include some pretty heavy workdays. I've got to get my house cleaned up now that I have a reasonable amount of energy. It's making me crazy. At least I got all my laundry done over the past couple of days.

Will try to check in again before my next Doctor appointment and post pictures of my leg (now OK for mainstream viewing) and hopefully SOON, one of my leg fully healed with all skin intact!

For now, Happy New Year!