Wednesday, November 19, 2008

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,


Friday, November 14, 2008

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.

Thursday, November 6, 2008

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.

Tuesday, November 4, 2008

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.

Monday, November 3, 2008

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: 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.

Sunday, October 26, 2008

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:

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

Tuesday, October 14, 2008

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.

Sunday, October 12, 2008

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,

Tuesday, September 30, 2008

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....

Tuesday, September 16, 2008

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

Monday, September 15, 2008

Pictures of my daily routine

Every day, Monday through Friday for 6 1/2 weeks (starting the Wednesday following Labor Day ending on my birthday, October 17(!)) I need to get external beam radiation therapy. The machine is called a linear accelerator. Here are some pictures that help explain the + and - stickers on my leg. They are basically registration marks to line up the radiation beams, and they match the foam leg cradle that was made based on the CT scans they took of my leg during the first part of my simulation before Labor Day.

They made a 3-D cast of my leg so Dr. Godette and a Dosimetrist (another member of the Oncology team) can figure out exactly where the beams should go, and together they plan my dosage and course of treatment. (Or something like that, anyway.)

I lie face down on the table, putting my leg into the little foam cradle, they position me "just so", and leave the room. I think Mike inputs my info into the computer which has my prescription and the targets pre-programmed. The computer controls the linear accelerator, which zaps me for maybe 20 seconds in one position, and then it rotates to a different angle and zaps me for another 15-20 seconds. That's it. I don't feel or smell anything happening, but there is a high-pitched buzzing sound that goes on while it's active. There's detailed information at the site below for those who want to know the specifics about how external beam radiation works.

I drive downtown for 45 minutes to 1-1/2 hours each way every day for a very expensive treatment that lasts maybe 40 seconds. (Although some days the wait can be fairly long.) On Tuesdays my appointments are much longer because Dr. Godette sees all the patients personally to check on their progress, monitor any side effects and answer any questions we might have.

I asked Mike if they get many repeat "customers." He said no, which was reassuring, but that people DO come back to say "hi" just because they like them.

Today I was at the hospital for several hours because I had to fill out forms requesting that errors I found in my medical records be corrected. I had to fill out ANOTHER form requesting to set up an appointment to see ALL of my records, but I really want my baseline records to be as accurate as possible, and the number of transcription errors and typos were somewhat disturbing. They don't make it easy for you to FIX these either, but I think it's worth it to just take care of all this NOW since I'm downtown every day anyway.

Pictures from daily radiation treatments

As of today I've had 9 of 33 treatments; woo-hoo! It's going by pretty fast, and so far my skin is holding up very well. Today Mike, (the Senior Radiation Therapist) took off two more stickers near the crease of my knee and painted those with silver nitrate too. (The picture of my leg was taken on 9/11/08, before this latest change.) The other stickers on my leg are in spots that don't bend and are farther away from my incision, so I'm not as concerned about being able to put medicine on those. I like the XClair cream a lot, but I really DON'T like the way the Aquaphor feels; it's kind of sticky. I just ordered some manuka honey which I read an article about in the waiting room last week. This honey from New Zealand has healing properties that are far stronger than in most honey. I figured it's worth a try. (Hey, if it doesn't work at least I can still eat it! I won't be eating the Aquaphor, that's for sure...)

Here are some pictures I took last week of the radiation therapists I see every day. Mike is by himself in the photo at the top. At left, that's Josh (a medical student I've only seen once or twice,) Niki, and Beverly (who used to be a school teacher) .

Derrick, a new radiation therapist, started on Thursday. He just moved up here from Houston (good timing since Ike just hit!) I asked if he was a med student and he said he'd been doing this for 13 years....(sigh....I'm getting old because almost EVERYONE looks really YOUNG to me.) He's from Biloxi originally, but moved to N.O. and worked at Charity Hospital before Katrina hit. Then he moved to Houston, and now here. I'll get a picture of him soon.

The other photos are Brenda (one of the nurses) at the desk, and in the treatment room, Niki and Beverly. I promised Beverly I'd block out her face since she REALLLLLY didn't want her picture taken right then, and Mike took it anyway.

Photos below are Hailay, my valet parking attendant, and the Agnes Glenn Building where I go every day Monday through Friday to have radiation. It's adjacent to Emory Crawford Long Hospital where I had my surgery.

Wednesday, September 10, 2008

New friends in the waiting room at Emory

Happy Birthday, Mom! (September 10)

A lot has happened since I wrote last, but it's too late tonight to catch up. So here's a picture I took in the waiting room on September 9. Here's Joya, me and Heather, waiting to get our radiation treatments. How on earth did all of us wind up with cancer?!

Joya has breast cancer, and she had to go through chemo as well, but is doing great. Heather has a type of sarcoma too (it was a low-grade sarcoma that was on the front of her leg for at least six years!) Neither of us needs chemo, but Heather will need another surgery after radiation since her doctor did NOT expect her tumor to be malignant, and they need to go back in and scrape out her leg to make sure everything's gone. Again, I'm just so amazingly lucky that Dr. Oskouei (and apparently Dr. Maxa, since he referred me to Emory) suspected sarcoma from the beginning.

Although the drive downtown every day is tedious, it has been really interesting and encouraging getting to know other people who are going through this at the same time. Without exception, every other patient I've spoken with is extremely optimistic about their prognosis. We ALL feel very blessed.

Bye for now. I'll have to backtrack a few days to put some pictures on from Bubba & Aida's visit during their evacuation from Hurricane Gustav during Labor Day week, and then I'll post some more pictures of people who work at the Emory Winship Cancer Institute, including some pictures of me on the table preparing to get my treatment. (So be sure to look BACKWARDS in this blog to Labor Day week since I didn't actually get around to posting that stuff till 9/16/08.)

So far my only side effects are some swelling at (usually at night) which started on Saturday night, and what looks like a faint sunburn at times on part of my thigh. The skin around my incision is darkening, and I had them take off the "plus sign" sticker that's nearest my incision in the crease of my knee because it was bothering me and I was afraid it would eventually start to hurt. They painted my skin with silver nitrate which will last about 2 weeks. It has felt significantly BETTER today, and I can put the XClair cream on it, so I'm a happy camper today. SIX treatments down, 27 to go. This picture shows what my marks looked like on Sept. 9, 2008, BEFORE the silver nitrate change.

Tomorrow is 9/11. Hard to believe 7 years have passed since the terrorist attacks. The choir is singing at a special Mass, and then we'll practice for the weekend after that.

Wednesday, September 3, 2008

Radiation Begins

Radiation began today; treatment 1 of 33. You hear a buzzing noise when you're getting zapped, but you don't feel anything (although I SWEAR I could feel static electricity or something the first time.) Maybe it was my hair follicles boiling (or, like I told Mike, the Senior Therapist, my CELLS frying.)

The white marks are my "permanent" marks now. The area within the black outline is the area being irradiated. I can remove that; I asked them to mark it for me so I could see the actual area that I need to put the medicine on, and so I could show everyone via this blog what was happening.

The first visit took longer than any others will, because after my first treatment, Ann (the nurse practictioner) and Dr. Godette both talked to me for a while.

Bubba, Aida and the girls went down to Destin for a little vacation at the beach instead of heading back to New Orleans just to sit in the traffic again since people are only being allowed to come back just now. They will go back on Saturday. Mom and Dad evacuated to Aunt Jan's in Ocean Springs, MS, and they'll go back tomorrow or Friday.

Tuesday, September 2, 2008

Simulation Day

Here's what my marks looked like on September 2, 2008, the day after Labor Day, when I had the final part of my simulation. They take a bunch of X-rays and position you on the table to make sure everything lines up.

Bubba and Aida, Allie and Amie, Vicki, the two birds and all their valuables arrived yesterday afternoon after they spending the night in Birmingham, Alabama since it took them 17 hours to get just that far from New Orleans in the evacuation traffic for Hurricane Gustav.

Bill and I both feverishly researched hotels on the internet for at LEAST three hours straight, and the only one we could find at all that still had room was in Birmingham. There was nothing at all in Mississippi along Hwy 59/20, the route they decided to take, and it took them FOREVER just to get past Meridian. Had they attempted to get all the way to Atlanta, they wouldn't have arrived until 5 a.m. and would have been on the road for ~21 hours straight.

They said the hotel was PACKED with people and all their pets and valuables. Bill had called the hotel about an hour after we made the reservation and pretended he was Bubba calling, wondering if they might be turned away since pets weren't allowed and nothing else was available. The hotel was already sold out by then, but they verified that they WERE holding a reservation for him, and yes, Vicki (their Dalmatian) would be OK.

I cried on Sunday night, overwhelmed that I would have a house full of people and animals in the same week radiation was starting and our first choir practice of the season was happening, when I had absolutely no time or energy to prepare myself for all of this. It was great to see the family but since my surgery, I had only had "close to normal" energy levels for maybe two days before they arrived, and I've been too exhausted to think straight, much less get any work done to prepare for the fall. But all was fine. I kept Sybil locked up in the bedroom and master bath the entire time they were here so Vicki could have run of the house, and the kids are really well behaved. The timing was just really stressful, though.

Friday, August 29, 2008

Hurricane Gustav....will it be Katrina Part 2? Our Lady of Prompt Succor, hasten to help us!

Bubba called me the other day to see if he, Aida, Allie, Amie and their Dalmatian, Vicki could evacuate to my house if Gustav hits New Orleans. Hurricane Katrina hit exactly 3 years ago (August 29, 2005) and right now it looks like Gustav's headed straight to LA. Mom said the levees are already leaking, and the Times-Picayune front page shows that much of the work is incomplete. I read an article a few days ago that said the pipes near the City Park pumping station are rotted through. It has flooded there every time it rained since I was a little kid, and they still haven't fixed it! Unbelievable.

So here we go again. Mom and Dad will be going to Val's house near Dallas if there's a mandatory evacuation. The second half of my radiation simulation is Tuesday, and I begin radiation on Wednesday at 1:30 p.m. My regular appointment time will be 9:30 a.m. every day starting on Thursday, Sept. 6 (when adult choir practices resume.) Wow, it'll be a busy week!

I've attached some pictures from my January 2006 visit to New Orleans, 5 months after Hurricane Katrina. Some, like Bubba's FEMA trailer and the high water lines and spray-painted rescue grids like Val is showing at her old duplex were typical of things you'd see all around the city.

Others were things I NEVER saw on TV, but was so prevalant across the Gulf Coast (and has been in every disaster) that it defies any rational explanation. Statues of Jesus, Mary and other saints often stayed intact, but the churches/houses they stood in front of and everything around them had been destroyed. Why? Our Lady of Prompt Succor is the Patroness of the state of Louisiana, the Archdiocese of (and the city of) New Orleans. Click the link for more info on the background of how that evolved. Every year during hurricane season, Catholic churches across the Gulf Coast always include a petition in the Prayer of the Faithful invoking her intercession to protect the city from harm. The city of New Orleans and the Gulf Coast needs her help again to avoid Katrina Part 2.

Our Lady of Prompt Succor,
Hasten to help Us!