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

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.

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.

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!

Getting ready for radiation

Here's a picture of my leg taken Monday, August 28, showing the preliminary markings they put on me. They did a CT scan of my leg and sent the data down to Crawford Long so that Dr. Karen Godette can fine-tune my radiation plan. Dr. Godette reminds me of Condoleezza Rice. A very sweet, soft-spoken and classy lady.

Unfortunately, I DO have to go downtown every day for radiation since the only two locations Emory offers radiation therapy are the University Campus and Crawford Long Hospital, which is actually easier to get to even though it's one exit farther away.

My incision is healing very well, and I was surprised that it never really hurt. The red dot below my incision is where a piece of suture that looks and feels like fishing line has been poking out of my leg since August 4. I wish it would dissolve! It's annoying! My friend Karen at the office calls the purple marks "my crosses to bear." Next Tuesday I go for the second part of the simulation where they'll re-mark my leg, and I think I start radiation on Wednesday.

They say that one of the warning signs of cancer can be a wound that doesn't heal, and I've known people in that situation. They found out they had cancer after going to the doctor to see why bone breaks that weren't healing. I also had a very mild warning sign that I ignored all summer because it was so minor and unusual. Sometime this spring or so I noticed a crack in my left heel, and no matter what I did to it, it would not heal AT ALL. It was at its worst during July or so, just before my surgery. I noticed yesterday that it was almost healed, all of a sudden, within the span of maybe three days or so. So I guess now that the tumor is gone and my left leg is pretty much healed from surgery, my body has enough energy left over to FINALLY heal that little wound. That's really amazing.

Thanks again for all your ongoing prayers! I'm in great spirits compared to last week, because technically at this point I'm cancer-free and the radiation is "just in case." I think I should change the subtitle of this blog to "a whenever I get around to it" account. There's no way it's gonna be "day-by-day" as we get into the fall! Bye for now, and God bless!

--Helen

Hello and thanks for your prayers-a detailed explanation of my summer from June 1, 2008-August 22, 2008

August 22, 2008-Queenship of Mary, and 6th anniversary of my beloved grandmother (Mimi)'s passing into eternal life.

Hi, everybody,

Thanks so much for your prayers and emails. The details of how I found out I had cancer (undifferentiated soft-tissue sarcoma, in my left leg) are at the end of this email. I got fabulous news Wednesday and today which I KNOW is because of everyone's prayers, because it (especially Wednesday's) was far better news than I ever expected. I was just hoping that the CT scans of my lungs Wednesday morning would come back clean, and they did, thank God.

The "miracle" is that I found out that I DON'T have the nasty cancer they SUSPECTED I had. All the tests they had completed as of Tuesday morning indicated that it was SYNOVIAL sarcoma, an extremely rare and aggressive soft tissue cancer, but the one test that tells them definitely yes or no (since it's identified by a specific chromosome's defect) finally came back that afternoon as DEFINITELY NO!!

I still have a high-grade sarcoma (which means it's still likely to recur or metastasize) but the other good news I found out is below:

1. The results of my lung CT scan Wednesday were "excellent; very clean."

2. I just found out that the results of yesterday's full-body bone scan were ALSO clean.

3. I definitely won't need chemo, just 6 1/2 weeks of radiation every day Mon-Fri for 6 1/2 weeks, starting the day after Labor Day.

4. I won't need to have the lymph node biopsy they had scheduled me for next Wednesday (which was more surgery) because synovial sarcoma is one of the very few sarcomas that metastasize to the lymph glands. Most DON'T, so I'm basically considered safe there. That was a huge relief.

5. My surgeon (Dr. Oskeouei) said the cure rate for kind I have (it's called "undifferentiated sarcoma" since the proteins in it don't match any of the regular categories) is 90%, since my tumor was considered small (3 x 4 cm), it was superficial (near the skin, entirely in the subcutaneous (fat) layer of my leg but not touching any muscle, bone or blood vessels) and the margins of healthy tissue around it all came back negative (clean--no cancer cells.) Based on the high "cure" rate he gave me (which is partially due to the fact that it was in my leg and far from the major internal organs), and looking at some tables in various websites, mine is between a Stage I & II cancer.

Sarcomas aren't graded the usual Stage I,II,III, IV way. They're low grade or high grade (low is better,) and there are subcategories for each. Now that I know the results of my bone scan, mine is G3, T1a, N0, M0 (G3=the cells look very different from normal cells and can contain many dividing cells that make it more likely to recur or metastasize than more "normal" cells; T1=tumor size is less than 5cm, a=superficial; N0=it has not spread to the lymph nodes, M0=no metastasis to distant sites, the most common for sarcoma being lungs and/or bones.)

More detailed information about sarcoma staging is here:

http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_sarcoma_staged_38.asp?rnav=cri

God takes such good care of me! It was so amazing that I even NOTICED this tumor, and also amazing that it was treated properly as soon as possible. Last summer, a wonderful transitional deacon from Cameroon, Africa was stationed at our parish, and I kept in touch with him over the year when he went back to seminary in Maryland. I was invited to his ordination as a priest on May 31 and he asked me to play the piano and organ at his first Mass, on June 1.

The church was so packed with people that I couldn't move the organ bench out far enough, so I banged the side of my left leg on a box that was attached to the organ, and the back of my leg on the corner of the organ bench every time I got in and out. The next day or so, I was shaving my legs and I knew how I had gotten the large bruise on the side of my knee, but I felt a very slight swelling behind the crease of my knee just where the bulge of my calf starts. It didn't hurt at all, but I had never noticed it before, so I figured, "WOW, I must have hit my leg a lot harder on the organ bench than I thought. It must be a hematoma." I iced it for a while for a few days figuring it would go away, but it didn't.

Then I joined a health club and was working with a personal trainer while waiting for a group program to begin within the next few weeks. By then the swelling was getting larger, but it was still soft, and a little rounder in shape. I started thinking it might be a Baker's cyst because I had banged up that same knee in an accident a few years ago and had bursitis in it for a whole year. (A Baker's cyst is when the fluid from your kneecap leaks through the knee joint to the back of your leg and forms a cyst.) I asked the trainer if she thought that's what it might be, but she said she didn't think so, and would be more concerned from my story that it might be a clot. She told me that I should get it checked out right away just to make sure. Had it not been for her, I would not have sought medical advice for at least two more weeks, and by then it had gotten noticeably larger and harder.

July was a nerve-wracking whirlwind of doctor's visits and tests with no conclusive results. I went to my regular doctor, who also didn't think it was a Baker's cyst, but he thought it could be an enlarged lymph node, so he sent me to have a sonogram, which revealed a mass in my leg. Then I had a needle biopsy which came back as a "spindle cell neoplasm" (tumor) with abnormal cells in it, so my doctor referred me to the chief orthopedic oncologist at Emory (Winship Cancer Institute.) Dr. Monson specializes in sarcoma, a rare soft-tissue tumor, and according to the Sarcoma Alliance webpage, there are only TWO orthopedic surgeons in all of Georgia with this specialty--he and Dr. Oskouei, at Emory. http://www.sarcomaalliance.com/centers.html (Scroll down; there are none listed in Wisconsin!)

Sarcoma represents less than 1% of all cancers every year, and one website I saw said that most family practice physicians will see only one to two patients with sarcoma every 25 years, and it often goes misdiagnosed and therefore mistreated, often ending in disaster for the patient. My doctor must have known from the very beginning that this was a possibilty since he didn't just refer me to have surgery at the nearest hospital. This was mid-July, but Dr. Monson couldn't even see me for a CONSULTATION until August 5. I asked my doctor if it was OK to go to Dr. Oskouei, who could see me the next week. He said yes, because Emory uses an interdisciplinary team-approach and all the doctors discuss their cases weekly, so I'd benefit from the entire team's experience anyway. I just wanted the tumor OUT as soon as possible, so I opted to go to Dr. Oskouei, and thank God I did THAT, because my surgery was scheduled for August 4, the day before I would have even been able to CONSULT with Dr. Monson (and who knows how far out his surgery schedule was booked!)

Dr. Oskouei told me based on the blood test and needle biopsy results, he suspected that I had a low-grade sarcoma, but that due to its size and location (very close to the surface of my skin, not buried in the muscle and far away from major organs) that I would probably NOT need chemo, only radiation, and maybe not even radiation. So next I had an MRI which was STILL inconclusive, and I was scheduled for surgery a few days later (my first ever--I've never even needed stitches before, and had never been in a hospital.)

I was supposed to get the pathology results in 5-7 days, but they told me at 5 days the results weren't back yet and special stains were ordered. At 7 days (August 11), I was told only after pressing them for at least SOME kind of information that they "suspected" it was malignant, (which is what I had been expecting since my first visit with the surgeon.) but they didn't know what type of tumor it was yet. (Sarcomas are extremely rare and the subtypes can share a lot of characteristics but they behave differently, so a precise diagnosis is critcal for proper treatment.)
On Wednesday, August 13, I was told it was "definitely malignant" but they still didn't know exactly WHAT it was. I spent almost all day that day on the phone with the hospital and various secretaries, when they scheduled me for a consultation with the radiation doctor, another with another doctor to schedule a lymph node biopsy (which would require another surgery under a general anesthetic instead of the spinal I was able to have for my leg surgery), a meeting with a social worker, a CT scan of my lungs and a full-body bone scan (all of which I completed Tuesday-Wednesday and Thursday of this week.) PRETTY SCARY!! Clearly they suspected SOMETHING specific to schedule all this stuff, but nobody would tell me any details. I got the impression that they were waiting for my surgeon to tell me at my post-op checkup on Wednesday, Aug. 20.

At 6 pm on Friday, Aug. 15 (Assumption) Dr. Oskouei's secretary, Julie, called me from her cell phone in her car (since I had left two messages earlier that day to please call me with any updates she had so I wouldn't have to wait ANOTHER weekend to hear any news.) Julie knows my voice on the phone now and said she was surprised she didn't kinow my number by heart already. She apologized for not being able to call back during the day, but she realized she had left the office without calling me back and didn't want me to be left hanging again, so she called information to get my number on her way home. She said the results STILL weren't complete, but that it was a high-grade type called synovial sarcoma. This was a shock because all this time I had prepared myself for a low-grade malignancy with a great prognosis and very mild treatment (if any, other than the original surgery) needed.

I did some research over the weekend and was even more horrified at what I saw: synovial sarcoma is an extremely rare and dangerous cancer that can spread to lungs, lymph system and/or bones, but I started preparing myself as to how I was going to tell my family, and I cried on and off with various people over the weekend. Only 800 people a year in the US are diagnosed with that type of cancer. On Tuesday, I found out I was going to need 6 1/2 weeks of radiation every day, Monday through Friday starting the day after Labor Day, in downtown Atlanta (about 40 minutes away in GOOD traffic, 1 1/2 to 2 hours in morning rush!) The lymph node biopsy doctor didn't sugarcoat my diagnosis and agreed that it was a nasty one, but she tried to console me as much as she could and said they'd take good care of me. Some of the stories I saw online were of young, healthy people like me who felt perfectly fine and then were dead within 2 years. Longer term survivors suffered multiple recurrences, metasases, surgeries, radiation, and chemo. Terrifying, even to a person with great faith.

So we set up a lymph node biopsy for NEXT Wednesday, August 27 since I was going to have to do that before starting radiation. It was a very depressing day. I spent 9 hours at the hospital and about that much time on the phone telling family and friends what was going on. Went to bed exhausted and hoarse. Wednesday morning was the CT scan of my lungs, which was an extremely important test, since all types of sarcomas tend to metastasize to the lungs. Cyndy, a friend from work drove me to my appointment, which was followed by my post-op visit with the surgeon, who read the CT scan results that morning. She came with me just in case the news was bad. But PRAISE GOD!! What I consider to be no less than a miracle unfolded, as explained at the beginning of this email. So for finding out I still have a high-grade cancer, Wednesday was a JOYOUS day since it's not the nasty cancer I THOUGHT I had for several days.

I still have to do the 6 1/2 weeks of radiation, but no chemo, no lymph node biopsy, and a much better expected outcome than I would have had if it was synovial sarcoma. Again, thanks for your continued prayers, and I'll keep y'all posted as things progress. Up till last Friday, I was amazingly calm and at peace because of my faith and also everyone's prayers, but for that last little 5 day stretch till Wednesday morning I started being afraid like Peter when the wind and waves whipped up, and I started sinking. But like Peter, Jesus lifted me up and saved me from the worst, and my outlook NOW is really positive! To me this is no different than being healed physically from the scary disease I thought I had. I only have "undifferentiated sarcoma".

Other news for those I haven't been in touch with recently: I bought a house just after Easter, and I love my "new" parish (hard to believe I've been here 1 1/2 years already!) I have a great deal of support here from people in the music ministry and the parish at large. Best of all, my lifelong best friend/college roommate and her family live here (which is how I found out about this job; they're members of my parish and so I have a local "family" here. I've known her husband since the day they met, and her kids since they were born--they grew up calling me "Aunt Helen", so I have a true family right here, complete with nieces and nephews!) I'm only one flight hop away from my sister near Dallas and my Mom, Dad and brother in New Orleans (and I can also drive there in 9 1/2 hours if I want or need to.) I FINALLY have a new love in my life (we've been together for two months now) and he has been a blessing to me too. I miss you all terribly and think of you often.

Sorry about the weirdness in the fonts; I'll have to figure out how to fix that later!

In the name of Jesus, and Mary Our Queen,

Helen

http://cancer.emory.edu/index.cfm?capage=259
http://www.aafp.org/afp/990800ap/567.html
http://www.cancer.gov/cancertopics/pdq/treatment/adult-soft-tissue-sarcoma/HealthProfessional/page6