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.

Radiation is finished

Quick update, and then I'll write more tomorrow with pictures. I finished radiation on Thursday, Oct. 23, (not Oct. 20 as I had expected.) I found out on my birthday that I was scheduled for 7 weeks, not 6 1/2 as I was told at my consultation. I was devastated, and cried most of the day since my leg was starting to blister by then and I knew that having radiation four days the next week would be significantly worse than just ONE.

As of today the wound in the back of my knee is getting larger, as Dr. Godette told me it probably would. It really hurts now to either straighten OR bend my knee at all, and it was more comfortable after surgery than it is now. Starting with this post, I'm providing an outside link for those who REALLY want to see what my leg looks like (not for the squeamish) rather than subjecting everyone to it in this blog.
Click here for progress photos past 10/24/08: http://www.soprano1.com/blog

Here I am with my certificate congratulating me on finishing my radiation therapy, signed with good wishes by most of the people in the radiation oncology department. That's Mike, me, Beverly and Derrick in the photo. I broke out in hives all over my body the night before my last treatment and it was really hard to sleep; it's almost like I was having a premonition that something was going to happen. Unbelievably, Beverly called just as I was leaving the house to tell me the COMPUTERS WERE DOWN!!! I was horrified. Last time it was the machine, which was fixed fairly quickly. It took about two hours for them to get the computers working again, and they said although they were "running slow" it was safe to come in. There was no way I was going to extend this torture another day, so I went in. As of November 3, (when I updated this older post) my hives have finally stopped, although they tormented me, especially every night for about a week. NOTHING helped--hydrocortizone cream, topical or oral Benadryl, Xlcair, or manuka honey. The hives made me completely miserable since I was itchy all over my body--arms, legs, and all over my back, on TOP of the pain.

The stage I'm in is the worst phase of skin toxicity, which is moist desquamation. There's an easy to understand article at this link.

Management of Skin Toxicity

Pictures from October 14

Here's what my leg looked like on October 14. It's far worse now (I actually posted this on the 27th.)
If you click on the pictures you can see them larger (yes, but why would you WANT to?)
I'm doing this to document what happens in radiation therapy. I get 1.8 Gys (Grays) per day, and my total dosage including the "boost" I got during my final week was 64.8 Gys. The wounds on my inner knee are from where I removed paper tape that was holding gauze pads to the back of my knee. When these pictures were taken, the triangular wound on my inner knee actually bothered me much more than the back of my knee. It was hard to sleep on either side because it hurt so badly (even covered.) That delicate skin was where the beams exited my leg, but it never hurt or looked blistered prior to my injuring it by removing the tape.

Final stretch...

Long time no write....


I started having some side effects since my last entry--most notably, itchiness (and bitchiness) the first week of October and unexpectedly fragile, blistered skin this past week, compounded by sudden episodes of crying caused by emotional and physical exhaustion and some fear of what's going to happen next to me, I guess. The itching was fairly mild the first few days of October, but on Sunday night, October 5, I was rolling back and forth an itchy fold in the crease of my knee near the top of my incision that was driving me crazy, and it turned out to be a deep blister, which popped suddenly. It didn't hurt, but I was really surprised because the skin didn't LOOK thin like a blister. The good thing is that the puffiness went down and it didn't itch anymore, but I was taken aback that I didn't know it WAS a blister, and now I was going into my second to last week of radiation with exposed, open skin.

Mike wasn't around when I was there for my treatment Monday, Oct. 6, so Beverly painted the silver nitrate they mark me with right over my open blister, and THAT burned me for the first time, since she was a little-heavy handed and the skin was already raw, so that created a cross-shaped (how ironic!) burn that actually felt and looked charred for a couple of days right in the crease of my knee. Lovely. Because the skin is OPEN now, it rubs against itself and is uncomfortable every time I bend my knee. I am grateful that this development waited to develop when there were only two weeks left. The wound oozed all week, and is only just now healing a little as of 10/12/08. I'll need to take a picture of my leg again soon; another odd development is along the incision, where you can see dark round spots which may be where the sutures were. There only used to be two, but now there are four, evenly spaced. They're kind of like scabs, but it may be discolored scar tissue; I'm not sure.

This past week has been tough mentally and physically and emotionally as things get busier at work and I'm getting more tired from the radiation. Heather and Joya are finished with their treatments, so the familiar faces are gone in the waiting room, although I've been talking with some new people. Heather has to have her second surgery on October 27, so she'll be in my prayers for a successful surgery that won't require any more radiation afterwards.

My sleep patterns are still out of whack, and I've been having anxiety attacks or something at night where it feels like I forget to breathe and I have to take deep breaths to remind myself to get enough oxygen. Two acquaintances from my past who were around my age died last week (one suicide, the other was ANOTHER (probable) suicide; it was a one-car wreck and he was long-term depressed and an alcoholic.) Maybe their deaths have hit a little too close to home for me right now. Two other people I know lost their jobs within the past week. My IRA is only worth 60% of what it was when I bought my house in March, and that's the only retirement savings I have. The bills are rolling in and there are CO-PAYS for radiation that will be a total of $660, above my out-of-pocket limit of $1500 which I've met, but haven't really even begun to pay out yet. I've needed new tires and car repairs, and gas was an average of $4.29/gallon during the majority of my 6 1/2 weeks of radiation. As of today, it's "down" to $3.29. woo-hoo (use of all lowercase here is intentional.)

I had nightmares at least twice last week, which is extremely rare for me. Bad guys are trying to kill me and I can't move very fast to get away from them because of my leg. The second one was like a continuation of the first from a couple of days before that, but the recognizable surroundings were filled with elements that had been vandalized in the second dream--the safety features were gone, like locks on doors were broken, doors were completely gone, the keypad to my garage had been stolen. I interpret that as though everything that WAS familiar has changed now and my health (or maybe my skin) isn't "safe" or providing the reliable protection it always DID up till now.

An internationally known speaker, Christopher West, came to church over the weekend to lead a seminar on Theology of the Body, and I played for the opening Mass on Friday night, but I didn't take a nap on Friday and knew my leg was going to be really swollen/stiff by the end of the night since it already WAS when I left the house. I had to leave the seminar Friday night before the first break; my leg was so swollen and stiff by 8:15 that I could hardly bend it at all and the skin and tissue in my calf was almost completely numb.

I'm also having new side effects I didn't have before a few days ago. Although you can't tell by looking at it, my skin started to blister Friday night; it was really burning for the first time, and Saturday morning at about 7 a.m. I accidentally took a chunk of skin off where I had no idea it was so sensitive or thin. (I've been using paper tape to attach gauze pads to the back of my knee where it's been oozing for the past week, but it's never even hurt or felt sensitive at all where I put the tape prior to that morning, and it doesn't LOOK blistered.)

I think I'm going through some of the other stages of grief now. Maybe I've been in denial this whole time after all; I was really irritable the first week of October, and this past week I've been really weepy and emotional. I've been crying on and off at the drop of a hat for the past three days now.

I'm getting a little nervous and freaked out now since weird stuff is happening without warning, and my skin is getting less of the concentration of the beam than the tissue below it (so I hate to see what's happening an inch BELOW my skin....) Even though I only have six treatments left, these last ones will be increasingly more concentrated towards the tumor bed than before (they call it a "boost" and a "shrinking field") and they said the side effects will continue to get worse for about 2 weeks after I finish radiation before it starts getting better. I keep telling myself this is just a minor little test, at least it's not chemo, and Jesus suffered and died for me, and this is NOTHING. But it's still scary and I found myself crying on the phone to a couple of people yesterday. So please pray for me to continue to be strong and brave over the next few weeks. A lot of people suffer far more than I am, but I'm scared of what's to come, since the timing of this coincides with so much important stuff at church.

My best friend Stacie talked me into trying to delegate whatever I could these next couple of weeks, so Sunday morning I didn't play for the choir Mass, since we had a 2-hour liturgy committee meeting from 2-4 p.m. Instead of playing 10:30 and 12:30 and then leading the meeting, I only did 12:30 Mass and the meeting. It's the only work weekend since July 2003 (since I've been a choir director) that I have only played for one Mass between Saturday and Sunday. We have two Confirmation Masses next Saturday (10 a.m. and 2 p.m.) and I doubt seriously I'll be able to sing at both Masses. If I'm lucky, I'll just be able to manage singing at the second of the two Masses, which is the one that has almost nobody singing, so I'm most needed at that one. I'm so grateful that my assistant, Bob, is playing for both of them. I don't see how I'd be able to hold up for a total of almost 6 hours straight without a nap or being able to lay down with my leg elevated for at least an hour in between. Stacie also talked me into coming over Saturday night to watch the LSU-Florida game, so Bill and I went over there for the first time in ages, and that was really good for me to get out of the house and socialize with people (even though LSU got slaughtered 51-21.) (I had also gone over alone to Stacie's Friday a week ago, which was the first time we had seen each other in weeks. We were both in a funk, and it was nice to hang out and catch up.)

Thanks for your prayers and support as I go into my final stretch. The countdown is in progress; 6 more treatments to go, ending on Monday, Oct. 20. Bill took the picture of the rainbow on October 8. Funny, one of the petitions I wrote at church last weekend asked that God would bless us with rain to ease our drought and we got a long, drenching 3-day rain for the first time in ages. (The power of prayer from the people of the parishes I've worked at is astounding! I think the prayer chains at St. James and St. Monica's have a hotline to heaven.) The rainbow was around sunset and the green of the trees and grass in the back yard was unusually brilliant. I told Bill there had to be a rainbow, since it was steadily raining but the sun was shining and the light looked so unusual in the backyard, so I went and got the camera. Sure enough, there it was, over the next-door neighbor's house, reminding me of God's love right here in my backyard, and that He's always there with us even when the going gets rough. I was literally seeing the light at the end of this radiation/cancer tunnel. (God is good!)

Love in Jesus and Mary,
Helen

Quick updates

Quick updates.....

Here's my "radiation purse" I bought recently. I've gotten a ton of comments about it...I'm not exactly the "bling" type, but this really appealed to me.

My leg was looking about this red last weekend when Mom, Aunt Evie, Aunt Jan and my cousin Cindy were here.

We had a great time just hanging out

and talking. Last week the fatigue started hitting me a little bit.

My sleep cycle has been so messed up these past few weeks....I had been taking long naps after treatments (2 hours sometimes) but I stopped doing that and started trying to get to bed by 10:30 or 11:00, which for me is unheard of.

I've been sleeping till 9 a.m. and still kind of draggy in the afternoons, but I'm finally feeling a little more on an even keel than I have been up till now with the emotional rollercoaster slowing down now as we get (hopefully) to the end of this wild ride.

I put the Manuka honey on my leg Friday through Sunday and it looks better this weekend than it did last weekend. However, it has also started itching very slightly, (which is a new symptom) and the top of my incision and a spot where there was a suture sticking out of my leg for a long time started oozing a little bit for the first time. The honey causes a mild tingling sensation, (the article I read about it said it has natural hydrogen peroxide in it) so it seems to be doing something, but it LOOKS amazingly better overall than it did before, and it's definitely healing even though Mike said it probably WON'T while I'm having treatments.

I'm continuing to use the XClair cream which is working really well for me too; it helps with the mild itching (so does the honey) and so far I have no dryness/flakiness or blistering. I'm actually amazed at just how "normal" my skin feels except for the area around the incision which is still kind of stiff. lumpy and puffy. If I can just hold out this week without blistering I'll be SOOOOOOO happy.

Beverly (one of the therapists) called at 7:45 Monday morning to say that the machine was down, so they cancelled their morning appointments. I was kind of glad because I was exhausted that morning. Sybil woke me up at 3, then barfed up a hairball at 6, then I got a wrong number phone call at 7 a.m., then Beverly's call at 7:45.

Best of all, that meant my incision would have another day to heal. The downside is that now I won't end on my birthday and will have to finish up on Monday, October 20. But I REALLY like the idea that I'll only get nuked 4 times this week, and I get the weekend to heal again. They called later and said the machine was back up, but I was on a roll getting kids' choir stuff organized for our first rehearsal this week, so they said it was OK to just wait till this morning instead.

Children's choir starts Thursday; I'm really fired up about that. So far I have received sixteen registration forms and I expect more kids to show up without having signed up. I have a lot of 4th and 5th graders this year and a good number of new children coming in. I've missed the kids choir at St. James terribly these last couple of years, and was excited to teach the kids at St. Monica's some handchimes last year. We'll get to do a lot more since I'll see them every week now instead of just occasionally.

OK, so in a nutshell, radiation side effects in the past week are:

1. Mild fatigue that is somewhat different from before. I'm trying to adjust my sleep cycle to get more done now that I'm less frazzled about this whole ordeal and have gotten used to the routine.

2. Mild Itching on the top of my incision where it broke open and never fully healed before I started radiation.

3. Slightly LESS redness than last weekend which I attribute to the manuka honey.

4. Slightly MORE healed raw spot at the top of my incision (ditto #3)

5. Continued swelling in my leg if I sit or stand too long in one spot. I have to keep it raised or it gets hard as a rock. That has been the case since very early on, starting during my second week.

Things nobody mentions that you don't realize are REALLY draining till you have to do it:

1. DEALING WITH INSURANCE/BILLING QUESTIONS! I spent several hours on the phone yesterday trying to figure out insurance related stuff: my coverage, limits, exclusions, what bills I have to pay and which ones will be adjusted later. I've got two college degrees and this stuff is EXTREMELY confusing. The statements of benefits don't tell you enough detail to even know what the charges are FOR when you're having massive stuff done to you every day. I've gotten conflicting answers from the insurance company and the Archdiocese about some questions that will affect my out of pocket expense. I'm being billed for $20 a day in copays for radiation, which comes to a whopping additional $660 out of pocket over and above my $1500 maximum out of pocket expense which I've already met this year as of my surgery date. It's staggering, and the bills are only just now starting to come in.

2. Driving downtown every day is also draining, and for the past two weeks many gas stations haven't had any gas at all. Luckily I filled up over the weekend but it's scary to think that if you don't get while the gettin's good, you could be stranded on the highway somewhere.

3. Car maintenance and repairs. Had to get a new catalytic converter recently in order to pass emissions, but I am so relieved I DID this year; I had to get a waiver last year. Since I passed, now I needed to get new tires since mine are bald and I've still got three weeks of going downtown everyday and the last thing I need is a blowout. So I spent THREE HOURS waiting for my new tires to get put on the car today. At least I got my songlists sketched out through All Souls Day while I waited, but I think they tacked on an extra hour because I refused an additional $200 repair they recommended.

4. Never knowing how long you'll be there. One day my valet parking receipt said 7 minutes!!! That's ~90 minutes of driving MINIMUM for 7 minutes. Other days, it can be 1 1/2 hours. You just never know, and that's stressful and draining.

Anyway, that's it for now. I still feel VERY blessed that all of this will be over soon, and that even though it's stressful, I'm not in the pain or discomfort many people have to go through to get well. Hopefully I'll stay cancer-free for a LONG time (or forever.)

Thanks again for all your prayers. More pictures soon....

Checkin' in...

I've just finished my second week of 6-1/2 weeks of radiation therapy. Woo-hoo!! Tomorrow I'll be 1/3 finished.

Here's proof that I was checked in for my treatment today. (I'm the second name from the top.) You come in the front door, click the box next to your name on the screen to check in, and then go into the waiting room until you're called. One of the therapists (Mike, Niki, Beverly or Derrick) puts a sticker on your valet parking ticket every day so it's free. Every day except Tuesday you just get your treatment and go.

On Tuesdays, we're here for much longer since every one sees Dr. Godette, our Radiation Oncologist today. She said everything looks good so far, and the very minor side effects I'm experiencing (swelling at night, slight redness) are to be expected at this point. The only fatigue I have so far is really just long term from the emotional rollercoaster I've been on with this since June, only just finding out I actually HAD cancer ~August 12, got my final diagnosis of "undifferentiated sarcoma" on August 20, and of course the physical healing from surgery August 4 and the fall schedule ramping up already at church.

Here's Derrick and Niki just before my treatment today.

On the way home I saw the "Jesus" van, which can be seen around Gwinnett county every now and then.

And finally, here's Sybil relaxing in her grass patch. I recently got her a couple of new pieces of Bermuda sod, which she clearly prefers to the Zoysia I got last time; she hated it and never went near it.

Now it's time for ME to rest for a while so my leg doesn't swell up too early in the day. I was up way too late catching up with my blog, and I'll try to stay current from here on out.

Signing off for now. Just wanted to say thanks again to everyone for your continued prayers, especially all my wonderful friends at St. James in Mukwonago (and elsewhere in WI) and in Baltimore, MD as well as here at St. Monica in Duluth, GA, and to my friends and family in Louisiana, Texas and Mississippi and various other places around the world. Mom, Aunt Evie and Aunt Jan are coming to visit over the weekend, and I'm looking forward to that! (And hi to my Emory waiting room friends, Heather and Joya!) Joya is in her final countdown-she finishes her radiation on Monday. WOO-HOO!

Love, Helen