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