15 years cancer-free today--August 4, 2023! Still alive and kickin'!

15 years ago today, on August 4, 2008, I had surgery to remove an ALMOST 5cm high grade, not-otherwise-specified, undifferentiated spindle-cell soft tissue sarcoma from the top of my left calf. It was truly a miracle that I found it as early as I did; it went from a "smooshy nothing" to a large marble size within just a few weeks. It never hurt. Soft-tissue sarcoma is a very rare and deadly one, (less than 1% of all cancers) and they originally thought mine was synovial sarcoma, an even worse one. Two weeks after my surgery they told me they had ruled out synovial sarcoma but didn't know WHAT I had because my aggressively growing spindle-cell tumor didn't match any of the then-49-known subtypes. YIPPEE!! The good news was that I didn't need chemo, "just" radiation, which was a horrendous ordeal in itself--2nd degree burns that didn't heal for almost 6 months. And I found out later they didn't do chemo on me because it DOESN'T WORK for what I had. Glad I didn't know that at the time... Well, God wasn't finished with me yet because I'm still here and cancer-free! 

Thanks to all who prayed me through that time. 💝 It still seems surreal. 

My wonderful surgeon, Dr. Shervin Oskouei, told me not to make too much of blogs like mine that just stopped at some point and were never updated--it didn't mean the person had died, but that many had just gone on to live their daily lives and they don't think about sarcoma anymore. 

15 years out, I can say that's absolutely true, because while I remember my surgery anniversary every year, I don't always think to come here and update my blog. Both Dr. Oskouei and a followup oncologist I saw told me that if my sarcoma would have come back or metastasized, it would most likely have done so within the first 3 years, so at 15 years now, it's not likely to return. 

Praying for all battling sarcoma this year, and I'll try to remember to check in this time next year. Till then, keep the faith! God has a plan for you!

--Helen

**********************

Incidence and Mortality
Estimated new cases and deaths from soft tissue sarcoma in the United States in 2023:[1] New cases: 13,400. Deaths: 5,140.

The reported international incidence of soft tissue sarcoma ranges from 1.8 to 5 cases per 100,000 individuals per year.[2] The rate of new cases of soft tissue cancer in the United States was 3.4 per 100,000 people per year. The death rate was 1.3 per 100,000 people per year. These rates are age-adjusted and based on cases from 2015 through 2019 and deaths from 2016 through 2020.[3]
cancer.gov/types/soft-tissue-sarcoma/hp/adult-soft-tissue-treatment-pdq

4 Musketeers Reunion +1
L-R: Me, Denise, Susan, Angela & Stacie
Rosedale Restaurant, New Orleans
July 29, 2023

13 Years Cancer-free today and now [hopefully] cured of Hyperparathyroidism too as of July 6, 2021!

Well, the world has changed drastically since I posted last in 2018, and much of it not for the better. I'll just skip over the shared horror of 2020 and get to the good news for today, August 4, 2021 which is my 13th anniversary of my soft-tissue sarcoma surgery which I consider my cancer-free date. Woo-hoo!

Thank you to all who prayed me through these hurdles, thank you Jesus, the Divine Physician, Our Lady, Undoer of Knots, St. Padre Pio, venerable Antonietta Meo (Nennolina), my guardian angel, and my amazing and wonderful surgeon, Dr. Shervin Oskouei and radiation oncologist Dr. Karen Godette, both at the Emory Winship Cancer Institute.

God is clearly not done with me just yet because after my third kidney stone (March 2021) I diagnosed myself with hyperparathyroidism and had surgery at the Norman Parathyroid Center in Tampa on July 6. Already I feel so much better--many of my aches and pains are gone, a weird vague, persistent abdominal pain that started after my ureteroscopy and laser lithotripsy to remove the 8 mm stone has completely gone away, and I'm HOPING that I'll be able to get off one or both of my blood pressure meds by the end of the year as many people can.

Well, that's about it for now. If you've been diagnosed with soft-tissue sarcoma, you are in great hands if you're at Emory, especially with the great doctors I mentioned above. I loved them both! Prayers for all who are battling sarcomas and cancers of all kinds.

Till next time,
Helen

10 Years Cancer Free--Still Alive & Kickin'!

10 Years Cancer Free (the photo is from my 2-year checkup when they give you the Survivor T-shirt.) I'm still here, alive and kickin'!

4 Musketeers, lifelong friends, in 2018 and 1981:

Me, My Godfather and my Dad at Uncle Poe's 80th BD party in Morgan City, LA. July 28, 2018

9 Years today since high grade soft-tissue sarcoma surgery and life is GREAT!!

Still alive and kicking! Life is good. Today is my 9-year anniversary of my surgery for soft tissue sarcoma, and my most recent CT (last week) is still clear. I had gotten lazy about the followups but was having a CT for an unrelated issue so I asked if they could just include the supposed-to-be-annual one till next summer CT of my lungs. ALL CLEAR. Woo-hoo!!

Me at Lover's Leap, Lookout Mountain, GA
enjoying the beautiful scenery after selling my house in

Atlanta. Taken June 2, 2017.

Mitch, Dan, Kendra, Me & Debbie - Dec. 9, 2016

Since my last post 4 years ago (!) lots has changed in my life, most significantly that my Mom passed away on Easter Sunday of 2015, and I moved in with my Dad after that, but God is good to us all and I have a job I love, I work with fabulous people and I'm still cancer-free. I also visited with some dear friends in Baltimore last December (a mini-dinner theatre reunion that was and WILL remain a highlight of all of our lives) and I sold my house in Atlanta at the end of May and then took a mini-vacation to Lookout Mountain and Chattanooga which was just the tiny getaway I needed. I really miss living in cooler climates with beautiful views. That's the thing I miss most about living in Baltimore, Milwaukee and Atlanta--the rolling hills and/or proximity to expansive inspiring views, whether farmland or hills/mountains.

Daniel McDonald & Me, 12/8/16

Kendra Keiser & me, 12/11/16

Mitch Nathan & Me, 12/10/16

Toby Hessenauer & Me, 12/9/16

Mitch Nathan, Mary Wright & Me 12/11/16

Mary Wright & Me, 12/11/16

Bubba, Dad & Me-Jan 14, 2017

Annual Family Christmas Party at Becky & Francis Giardina's house.
Andy Mayer, me, Weezy Coy & Dad (Arthur Sigur, Jr.) Dec. 17, 2016

Just wanted to give y'all hope if you've gotten a similar diagnosis. Life is short so enjoy every moment and stay close to God. Before Communion we Catholics say, "Lord, I am not worthy to receive You, but only say the word and MY SOUL shall be healed."  That's the most important thing to keep in mind in any prayers for cancer patients, including your own. Our bodies are mortal, so any healing is temporary. Pray for SPIRITUAL healing for your/the patient's immortal soul. Can't go wrong with that no matter what the prognosis! Spend time with your loved ones. Pick up the phone and call, or VISIT. RIGHT NOW!! Life is precious and there's no do-over. None of us know when it will be our last day, cancer or not. God bless you on your journey! All readers of this blog remain in my prayers. --Helen

Coming Full Circle / Happily Ever After

Long time no post! This is just to let you know that I'm still alive and kicking and still cancer-free. (It will be 5 years since my surgery as of August 4, 2013.) Life has been GREAT since I moved back home to New Orleans in August 2011, and I felt so connected immediately it was as if I had never left even though I lived out of state for 23 years. I've been back home for almost 2 years now and I'm STILL on my cloud. LOVING IT!! There's no place like home.

Got established here in New Orleans with Dr. Mark Meyer, an orthopedic oncologist at Ochsner with whom I'm very impressed so far. He reviewed my films and records before my first visit and knew about my case at my first consultation with him recently. He spent a lot of time with me and agreed that it was OK not to have TWO CTs this year since as of August I'd be going to one annual CT now anyway. As a singer, I REALLY don't like that the massive cumulative dose of radiation to my lungs from the CTs puts me at greater risk for lung cancer when I don't even smoke.  So only ONE CT this year, which I had today, and an MRI (with contrast since I haven't had one in a while, and they'll have a recent one in their records at Ocshner.)

Both the MRI of my leg and the CT of my lungs today were completely clean as always, praise God! 

I really don't worry about it coming back at all, and as my surgeon advised me when I first was diagnosed, PLEASE, if you're reading blogs like this on the internet, don't assume that just because a blogger stops reporting that they have DIED. The fact is that I honestly don't think about it at all anymore, and I HAVEN'T for at least 2 years now. It's just not a part of my daily life since I'm fine now.

So if you've been diagnosed with soft tissue sarcoma like I was, (or any cancer,) you are in my prayers since I know the fear you're going through, and the endless obsessive hours a newly diagnosed patient spends scouring the internet for information good and bad to prepare you for what you'll experience. I hope that my blog, as brief as the section was about my actual treatment, and the followups I've tried to give when I have my checkups will give you comfort and peace of mind that many people like me CAN survive this and go on to live a COMPLETELY normal life.

My life is in very distinct chapters with really no overlap at all, with 2007-2010 being my "Reunions" chapter, and 2011-2012 "Coming Full Circle" with my move back home to New Orleans. (It's a quite literal chapter title too--I moved from New Orleans to Baltimore (10 years) to Milwaukee (8 years) to Atlanta (almost 5 years) to New Orleans....a big full circle.)  As of Valentine's Day this year I have felt strongly that I have transitioned into the final chapter of my future book, (although that doesn't mean my story is finished--it's just that I feel like I'm not wandering/journeying any more. I've finally found my destination at home.)  This chapter is going to be called "Happily Ever After."  It's still unfolding, but I have faith!!

God bless you and keep you safe through YOUR journey! He is always with you every step of the way.

Helen

Happy, healthy and home!

Long time no post.... LOTS has happened since my last post in March, 2011. My last CT and checkup were in August just before I moved. I'm still cancer-free (now 3 years and 2 months), and doing GREAT!  A high school friend of mine created a full-time job for me which enabled me to move back home to New Orleans. I'll be using my first B.S. degree again now (advertising/journalism) instead of my music education degree, and I'll have a normal schedule so that I can have a LIFE for the first time since 2003.

I had lived out of state for 23 years and was never homesick until I got on Facebook in Feb. 2009, reconnected with my first love who came to my 30-year reunion with me last August, and started rekindling friendships and starting new ones with "old" acquaintances.

I moved back to New Orleans on the Feast of the Assumption (there's Our Lady again, always with me!) and have been singing regularly at the Vigil Mass at St. Anthony of Padua Church, which is just 3 minutes away from where I live. I've also subbed for the 11:00 pianist twice already since late August. On September 17, I went to a Dinner Theatre Reunion attended by over 200 fellow actors/actresses/directors who were involved in the theatre scene in Baltimore prior to 2001.



Me, Mitch & Mary at the Baltimore Dinner Theatre Reunion, 9/17/2011

 Stayed with my ex-husband Mitch, whom I hadn't seen since I left Baltimore in 1998, and it was very comfortable and fun, as though no time had passed at all. He picked me up at the airport on Friday night, and we stayed up till 3 a.m. talking. Went to brunch on Saturday, to an antique mall (like old times) where we spent the majority of the day looking around, and then to the reunion that night. Had a blast reconnecting with everyone. Then it was back to the airport the next day.

It's GREAT to be back home, and I'm amazed at how happy I still am. It's far better than I ever dreamed it would be. LOVING my new job, love my old-fashioned neighborhood and the amazing blessings that are being showered upon me every day.

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.