Brief update

I had my 1st 6 month checkup/CT scan (rather than 3-month) and my first annual (rather than bi-annual) MRI of my leg on Friday, March 18. All is well! My surgery was August 4, 2008 and I'm still cancer-free. Woo-hoo!

New URL

Update your links! My old blog address http://hnathan.blogspot.com/ has MOVED to: http://helensigur.blogspot.com/ since I'm going back to my maiden name.

I Gotta Be Me!--I'm going back to my maiden name.

So much has happened this past year during my "Reunions Chapter" of my life. This chapter, like all the chapters in my amazingly compartmentalized life, had very clear boundaries: it started in the beginning of Feb. 2009 when I got on Facebook at the insistence of my sister and my first high school best friend Michelle, and ended just after attending my 30-year high school reunion with my first love in late August 2010. I'm going to stretch the end date of this chapter till the end of September, though, because this was the month I finally found and reconnected with my second high school best friend Sharon, who had been on the "whereabouts unknown" list in our reunion booklet.

Since about April of 2010 I haven't "felt" like Helen Nathan anymore. Reconnecting with so many people from my childhood and college days has made me feel like I'm really Helen Sigur again, so I filed a petition for a legal name change which should be final hopefully by Thanksgiving. Here's a fitting song to listen to while you read the rest of my post. Enjoy!



I feel that the purpose for my keeping my married name has definitely already been fulfilled (that's how I got my job here in Atlanta. NO LIE!) My predecessor's mother's name is Helen and her Dad's name is Nathan. That odd combination was a sign from God to her that I was "the one" they'd been looking for after three months. (And I was!) It would have been interesting but wouldn't have had nearly the impact had I just been "Helen Sigur." They hired me pretty much over the phone and I moved from Wisconsin to Georgia 4 days after returning from my interview. I never played a note for them. That just does NOT happen normally, but it's the kind of stuff that ALWAYS happens to me when things are right.

Now at this point in my life I feel like it's finally time to reclaim my true identity. After all, I haven't been "Mrs. Nathan" since 1999 and the only contact I have with Mitch is a couple of emails a year now at birthdays and Hanukkah/Christmas. It just doesn't fit who I am anymore.

During my "Reunions" chapter, various seeds were planted that haven't yet come to fruition, but I feel like I've transitioned into my next chapter already. Right now my working title is "Coming full circle," and I hope that's what's in store.

So for those of you who know me as Helen Nathan, I'm afraid you'll have to get used to saying "Helen Sigur." It sounds like "secure." Let's practice. Sigur = sig-YOUR. (That's not so hard, is it?) Enjoy this gorgeous fall weather. It's my favorite time of year!

Got my 2 years cancer-free T-shirt!!

Well, I had my last 3-month CT scan of my lungs on 9/1/2010 and all was clear again, thanks be to God! I am now officially 2 years (and 1 month) cancer-free, which means that from now until September 2013 (my next big milestone at 5 years), I will go for CTs of my lungs every 6 months instead of every 3, and MRIs of my leg once a year instead of every 6 months. The MRIs will also be without contrast from now on, instead of views with and without contrast. Although the injection is no big deal, I won't have to be injected with a chemical every time any more, which can't be good for you...

Thanks to everyone for your prayers. I feel great and have lost 22 pounds since Thanksgiving of last year. I took my first love with me to my 30-year high school reunion in New Orleans a few weeks ago and we both had a FANTASTIC time. Danced to "Stairway to Heaven" just like the olden days...


My 25th reunion was cancelled due to Hurricane Katrina (the city was under water and completely shut down at the time it was scheduled in September of 2005.) So this one was very special to everyone, and the people who had reconnected on Facebook beforehand probably had the best time, because we weren't long-lost strangers. We all knew what was going on in each other's lives now, and over the past year I have become friends with several people I didn't really even know very well in high school.

Everyone started posting high school pictures a couple of weeks beforehand, which added to the excitement as the date approached. Usually when there's such hype before an event, the event itself is a let-down, but this one wasn't. I laughed for at least 9 hours straight and the joy, energy and fun that night for everyone was through the roof non-stop. It was truly one of the best times I've ever had in my life. (Thanks, Sheryl and all the girls who put it together for us!)


Life is GOOD! Enjoy every moment!

(That's me with my Divine & Earthly Physicians who have kept me cancer-free these past 2 years. Thank you, Jesus, and Dr. Shervin Oskouei!)

Helen the Hibiscus has bloomed!

I'm so honored to be the subject of my friend Carol Shulfer's blog post today! She named her hibiscus tree after me and it bloomed. Thanks, Carol! Miss you! :-) ♥

http://cshulfer.blogspot.com/2010/06/happiness-helen.html

Also, while I'm here, I'll give you a quick update about what's been going on since last time. I had my 3-month CT of my lungs and 6-month MRI of my leg on June 9 and the results were both clean again. God has been VERY good to me and I am grateful for everyone's continued prayers. As of August 4 this year, I will be cancer-free 2 years, and after my September checkup I'll go for CTs of my lungs every 6 months and MRIs of my leg once a year (through 2013.) Then I'll go for annual CTs once a year (I don't know the frequency of MRIs) through August 2018. It's still surreal to me that this ever happened, and amazing that 2 years has passed already. I only rarely have problems with lymphedema in my leg now, and when I do it's usually mild, which is a huge improvement over this time last year. The scar from my worst radiation burn is much smaller than I would have expected and the tightness I had in my calf muscle for a long time is gone, probably because I've been exercising regularly since January. I also can sit on my heels which I WASN'T able to do until this year comfortably due to swelling in my calf and also the tightness in my quads and muscles/tendons/ligaments around my knee since I couldn't use it fully for so long.

As I mentioned above, I've been exercising regularly for the first time in my life, really, and I'm in better shape than I have been in years. Since last Thanksgiving I've lost almost 20 pounds, 13 of those this year (since I gained some back when I wasn't as diligent in mid-April to mid-May it took a while to lose it again.) I went to New York in mid-May for a girls' weekend; my friend Denise Killeen & I stayed with our friend and fellow sorority sister Laurie Gregg in Manhattan. We did a lot of FAST walking and I was able to keep up with both of them, and I'm positive that even pre-cancer I would have had to slow down or stop occasionally since they are both twigs and Denise's legs are so long it seems I have to take 4 steps for every 2 of hers.

I'm looking forward to my 30-year high school reunion in New Orleans on August 21; it will be much more fun for the people on Facebook than those who aren't, because we're all up to date with each other's lives and won't feel like strangers.

That's about it for now. I'm enjoying a more relaxed pace this summer and recharging my batteries so I can have a productive year. This is really the first opportunity I've had to rest mentally and physically since I moved to Atlanta over 3 years ago.

Which brings me to one final thought... it's hard to believe that I've been in this position for 3 years and 4 months already, almost exactly as long as I was Director of Music & Liturgy at St. James in Mukwonago WI. (Although Glen & I covered the Vigil Masses there for 3 full years before I became the Director.) Time flies....

Happy birthday today to my ex-husband Mitch--he's 56 today)

Helen & Mitch Nathan, May 28, 1990

and Happy 15th anniversary tomorrow to my sister Valerie and her husband Kevin. I wish y'all all many more!

Mike Rareshide, me, Kirk Redmann, Peggy & Kevin Schott

at Val & Kevin Linn's wedding, July 1, 1995. (Kirk & I sang.)

So far, so good...

I haven't updated this blog in ages since I'm on Facebook and all my friends know what's going on with me, but for the sake of anyone searching the internet for sarcoma survivor stories, I thought I'd just give you a quick update.

What my surgeon told me when I was diagnosed in 2008 and frightened by all the scary blogs I found is TRUE: People like me who survive and go on with their lives are less likely to continue blogging about it as time passes by and they go on with their regular lives. Amazingly enough, less than 2 years later, cancer is simply not something I think about every day, much less want to dwell on! I have so much to be grateful for, and "I've got a lot of livin' to do!"

So please keep that in mind when you come across all the heart-wrenching stories of people who aren't as fortunate as I have been... there ARE a lot of success stories out there, but most people who are staying cancer-free are too focused on their daily lives to continue updates about their good fortune. This blog was a necessity when I was going through my ordeal so that I didn't have to re-tell what was happening to me to every person who asked. It's mentally, emotionally and physically exhausting (and virtually impossible) to keep track of what everyone knows and to recount your story by phone or email when you're actively going through this. Blogging was the most efficient way to keep everyone informed about what was happening to me, and it was cathartic for me at the same time.

I had my most recent 3-month checkup last Friday, and am still cancer-free as of that day... 1 year, 7 months and 1 day.

I'm feeling great and have been exercising regularly--more than I ever have since college. I lost 10 pounds in January just by walking, and am trying to do 10,000, 11,000 and 12,000 steps at least three days every week. My leg still retains fluid from time to time due to damage to my lymph system from radiation, but I'm relieved that it's never as bad or long-lived as it was all last year. At worst my leg just feels "full" or "tight" and maybe a 2-3 discomfort level rather than 9-11 on a 10-point pain scale. :-)

Thank you to all my friends and family for your continued prayers over these past couple of years. August 4, 2010 will be my 2-year cancer-free anniversary, and at that point I'll have passed the most common time frame for recurrence or metasasis. (And I get a T-shirt from my surgeon; woo-hoo!) Instead of having CT scans of my lungs and a checkup with the surgeon every 3 months (and MRIs of my leg every 6 months,) I'll go every 6 months for the next 3 years for the CTs and checkups (and not sure how often the MRIs will be.) I'm looking forward to that, because it's usually a half-day affair at Emory every time I have to go.

This weekend, the 4th Sunday of Lent, Catholics celebrate Laetare Sunday, the "rose" colored Sunday in Lent. Laetare is Latin for "Rejoice!" as we anticipate the joy of the Resurrection at Easter, and I certainly have reason to do just that. I am truly blessed!

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!

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!!

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!

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!

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!

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.

ASTYM

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.

http://www.saunders-therapy.com/astym.html

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.

http://www.performancedynamics.com/patients/treatment.asp

Talk to y'all soon,

Love,
Helen

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.

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!

FINALLY--some progress!

Today and yesterday were the most productive days I've had since I had surgery August 4. FINALLY, I can see noticeable progress in the healing of both of my wounds. The large one is not oozing anymore (most of the time) and it is finally starting to generate new skin. In this past week alone about 1/3 of it has gotten covered over, and that's really encouraging. It started with little raised white dots (I call them "skin volcanoes") that must have generated the skin cells, because shortly afterwards there were little islands of skin that eventually started filling in between. The new skin is not completely stable yet, and it's very sensitive, but at least it's not a huge gaping completely OPEN wound anymore. The smaller of the two wounds (in the crease of my knee) has also made considerable progress since the weekend, and I think that one will be probably heal over by the weekend at this rate.

Even better, the swelling in my leg around my largest wound (and also in the back of my knee) is starting to subside enough that I can bend my leg to a 90 degree angle (but still not much more) because the skin is extremely tender and thin right where the folds start when I bend my leg. The area that's a purple color around the wound has also gotten smaller and the fluid seems to be less noticeable, which I'm sure is due to the antibiotics.

Anyway, I got a lot of legwork (no pun intended) done for Advent in the last couple of days, and today and yesterday taught all the kids in the 4 RE sessions the music for their end-of-year Mass in December. It was a blast and I got a lot of nice compliments including from a catechist who asked if I was a music teacher--she said she'd been a teacher for 24 years and thought I was very professional and did a terrific job.

I must say I was REALLY, REALLY happy with all 4 sessions. I started and ended exactly in the time allotted, without rushing, and covered everything that needed to be done in an organized way. My voice held up better today than yesterday, but my cough is still persisting even after 5 1/2 days of Augmentin.

I was able to get through both sessions both days without excruciating pain in my leg, and I haven't used the gel packs since the weekend. Last night after soaking in the tub with epsom salts, which I've been doing almost every night since radiation ended, my largest wound developed a shiny hard coating for the first time. I've been able to leave my leg uncovered most of the day as long as it has either XClair or neosporin on it to keep it moist. I've also been using a lot of Vitamin E oil on my skin, still using my manuka honey (which is almost gone) and for the past week or so, "bag balm" to keep the skin around the wound soft since it has lanolin in it. Up until the last couple of days, it has been very difficult for me to do even the most simple tasks if they require walking into other rooms, standing for very long or moving around too much.

I go for my CT scan of my lungs, MRI of my leg and followup with Dr. Oskouei on Friday, and my followup with Dr. Godette on Monday. I am hoping that my leg will be almost back to normal by Thanksgiving, and what a happy one it will be this year now that all of this is behind me.

I've been taking pictures of my leg daily, and will try to post those on Friday after all my appointments. Bye for now,

Love,
Helen

Treating the cellulitis in my leg and sinus infection in my head

I went to the doctor a little while ago and just got a prescription filled for Augmentin, which the nurse practitioner said should also help resolve the cellulitis in my leg that's hurting me so much. I didn't realize that even though it doesn't SEEM infected, it actually IS! I probably wouldn't have needed to suffer so much this past couple of weeks if Emory had alerted me as to what to look for. But since they said "it will get worse for about two weeks before it starts to get better" I didn't know that this wasn't completely the normal progression of things.
:(

I was able to direct both the kids choir and the adult choir last night for the first time in a month. My leg was swollen and stiff when I went home, and it was uncomfortable to drive home since I have to bend my leg to get in/out of the car and use the clutch, but at least it wasn't excruciating like it was up till now if I couldn't elevate my leg for that long. I did have to use the cold gel packs on my leg towards the end of the night, which at least makes it feel a little better temporarily. Hopefully with the help of antibiotics, that infection will clear up and my whole body will finally be able to get back to normal. It would be SOOOOOO great to be "well" by Thanksgiving!! (My CT scan of my lungs, MRI of my leg and checkup with the radiation doctor are all before Thanksgiving too.) I'll be amazed if I don't need physical therapy since I haven't had full range of motion in my knee since the end of July due to swelling from surgery, radiation and now this infection.

I'm sick!

I'm miserable!!! I can't believe this. I started getting a sore throat Monday night and it's been a full-blown cold with low fever Tuesday, yesterday and today. I've had what seems like a sinus headache all day (it's situated over my right eye) even though I've been popping Ibuprofen every few hours.

AACK! At least my leg is FINALLY starting to feel better. My assistant Bob offered to lead choir rehearsal when he heard how horrible I sounded on the phone so I took him up on his offer, even though he's led the last three for me . I had the "Saints Alive" LIFE event last Thursday, and he did the previous two since my leg swells when I stand, and I haven't been able to direct both the kids and the adult choir practices back-to-back since before Confirmation in early October.

I had already cancelled children's choir by email to everyone last night so I don't start an epidemic. 'Tis the season for cold and flu, and I really want to avoid a repeat of what happened a few years ago at St. James. A double-whammy virus made the rounds TWICE through every adult choir member in the months of November and December. It was AWFUL, and our Christmas rehearsals were severely impacted by the number of people out sick.

I hope I'll be mostly over this cold by the weekend, and my leg seems to be under control. I am praying that it will be noticeably more healed this time next week, which will make my life a LOT easier. Right now even though the pain has subsided to a tolerable level, it's still really hard to get around or do anything but sit on the sofa with my leg elevated, and it has to be covered almost continually since the wounds are still oozing a little and are far too raw to leave exposed.

Election Day 2008

President Obama. God help us. That's all I can say for today's entry, except that's a far scarier development for 2008 than my getting cancer.

Radiation is finished, but it ain't over yet...

Yesterday was a good day (and so far I'm OK today; I'm sitting with my leg up and a freezer gel-pak on it to keep the swelling down.) That helped me SOOOOOO much yesterday. Saturday night my leg was so swollen and it hurt so badly, I sobbed throughout the entire All Souls Vigil Mass and for probably a couple of hours after that.

Unfortunately, lymphedema is a common problem after radiation therapy. I really hope mine is only going to be temporary (acute) and not chronic, which is a possible long-term side effect. Click here for more info on lymphedema.

As of 10/24, my wounds are a little too gross to post here, so I'm posting them at a separate link now: http://www.soprano1.com/blog. I updated my post of 10/27 today, so even if you read it before, there is a little bit of new" info there. I still have to catch up between my birthday (10/17) and 11/2, but I'll do that in NEW posts so it won't be so confusing.

Aren't the roses my friend (and cantor/choir member) Becky sent me much prettier to look at? Thanks, Becky!! I got these on 10/22, and I still have about 6 that look pretty good! They brighten my spirits every time I walk into my kitchen.

Since radiation ended, my "recovery" has been a series of sharp contrasts of good and bad from day to day--I never know what to expect. It wasn't nearly as bad DURING the radiation as it has been this past week, so they were right that it would "get worse" before it gets better. (At least they warned me, but I just didn't have any idea that it would be FAR worse than what I had become accustomed to.) I've told people that it's kind of like a stock market chart (a rollercoaster is too smooth in this case.)

Here's a chart that kind of looks like what I'm going through. The initial downturn is the last 3 weeks of radiation. The steep decline after that is the past 11 days or so, and the jagged peaks and valleys with the upward trend are where I hope I'm headed now. I consider the red and green like good and bad days mixed in together. I got this chart here.

I didn't know how on earth I would be able to make it through two Masses on Sunday after Saturday night was so awful, but God had mercy on me. I brought the gel packs to Mass in an insulated lunchbox and wrapped the biggest one around my leg as inobtrusively and often as I could while seated at the piano during Mass, and that was a huge help. It seems that keeping my leg from swelling is the key to keeping the pain under control.

I've also been trying to take Ibuprofen on a regular basis to keep the inflammation down, instead of waiting till it hurts. Although I tried to stay away from the stronger drugs, I've had to take Vicodin a few times these past few days. My healing definitely seems to be on an upward trend, but the valleys are emotionally and physically painful, and I can see where more damaged skin is definitely going to have to come off before it can heal over. I just hoping that the skin underneath these outer margins will be more healed by the time that happens than the parts that came off already, so it won't be as painful. (Right now the area that is exposed is getting LARGER, not smaller, (the largest one is about 2" x 1" and it's almost certainly going to join the one speading out from the crease of my knee in a couple of days) but the redness and swelling around them isn't as severe as it was last week, and my wounds were never infected, so I think I'm relatively safe there--I would assume that the greatest danger of infection has already passed.) Also, some of the skin in the crease of my knee has healed noticeably just in the past couple of days, so that also gives me hope.

Again, I'm grateful that I didn't have to have chemo, but honestly, the after-effects from radiation have not been a walk in the park for me. But I'm ALSO grateful for the timing of this, because I have been offering up the only suffering I've ever really had in my life for a bunch of different intentions including the souls of specific loved ones who have died, for souls in purgatory who have noone to pray for them, and for a pro-life outcome to our election.

I can't tell you how much your prayers and support (and everyone's prayers who have helped me through this ordeal) have meant to me. I can't imagine the despair non-believers must feel going through this without God.

I am working from home today if anyone needs me since I can keep my leg elevated and iced. It really hurts when I stand or sit in a regular chair for any length of time. Even within just an hour it starts throbbing. They said that radiation destroys some of the lymph vessels and small capillaries, so my circulation isn't as efficient as it was before. I sure hope that I'll heal quickly from this particular side effect, but I've also been forewarned that lymphedema can be a long-term side effect from radiation therapy. Oh joy. At least when my skin is healed I'll be able to massage the area a little bit to help get everything moving.

Last night was the first time in over a week that I could bend my knee 90 degrees without significant discomfort, since my leg wasn't as swollen as it has been. The tendons/ligaments/muscles in my left knee are kind of achy since I haven't had full range of motion in that leg for at least 3 weeks now (and since my surgery in August I haven't been able to sit on my heels. I really hope I'm not going to need physical therapy for my knee because of all this, but if I do, I will ask to go back to the place I went last year for my shoulder (which was killing me due to an old injury.) They did a fantastic job in a short time considering how long I postponed getting proper care for it.