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

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

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. http://www.radiologyinfo.org/en/info.cfm?pg=ebt&bhcp=1

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.

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.

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.