Seth's Info

Prayer of St. Francis de Sales

2007-02-23T11:27:00.000-05:00

Be at peace.
Do not look forward in fear to the changes in life; rather, look to them with full hope as they arise.
God, whose very own you are, will deliver you from out of them. He has kept you hitherto, and He will lead you safely through all things; and when you cannot stand it, God will bury you in His arms.

Do not fear what may happen tomorrow; the same everlasting Father who cares for you today will take care of you then and every day. He will either shield you from suffering, or will give you unfailing strength to bear it.

Be at peace, and put aside all anxious thoughts and imagination.

St. Francis de Sales
1567-1622

Online obituary

2007-02-17T07:57:00.000-05:00

Seth's obituary may be viewed at the following links:

http://www.legacy.com/centredaily/GB/GuestbookView.aspx?PersonId=86462409

http://obits.pennlive.com/PennLive/DeathNotices.asp?Page=Lifestory&PersonId=86492166

Seth D. Edmondson (1970-2007)

2007-02-15T19:23:00.000-05:00

Dear Friends, I am so very sad to tell you that Seth passed away yesterday afternoon at home. We were having a normal afternoon and getting ready to watch a movie, when Seth began coughing and was unable to breathe. I can tell you that he left this world suddenly, very quickly, and by the grace of God, without pain. His death was a shock, but by no means unexpected, given the advanced stage of his cancer. After all Seth had been through in the past year, I felt that this was a gift from above that he did not suffer, and was not in some hospital room far from home. Only a few hours before, my valentine had hugged me tight, told me how proud he was of me, and how much he wished he could do more with me and the boys. I am the one who is so proud to call myself his wife and best friend.

Tomorrow the obituary should appear in the Centre Daily Times and Harrisburg Patriot-News. Visitation will be on Sunday at Koch Funeral Home, 2401 S. Atherton Street, State College from 2-4pm and 6-8pm. The funeral is Monday at 1:30 pm at Grace Lutheran Church, 205 S. Garner Street in downtown State College. In lieu of flowers, an education fund for our three young boys has been established for those wishing to make a contribution. These can be sent to: Nittany Bank, 1300 N. Atherton Street, State College, PA 16803, with a notation for the Edmondson Children Fund.

Seth and I have been so blessed by the outpouring of your love, prayers, and support over this past year. He and I have appreciated this more than I can ever possibly express. Seth touched many people's lives, and I can tell you that he felt your love in return! God bless you all, and please keep our family in your prayers.
With love,
Jenny

Treatment Update

2007-02-09T12:43:00.000-05:00

I had an unexpected turn of events the last 2 days. I had been having trouble earlier in the week getting an appointment scheduled at Fox Chase that wasn’t 3 or 4 weeks away. I got a call Wednesday afternoon asking if I could make an appointment Thursday morning at Fox Chase. I was able to get a friend from work drive me down to Philly early Thursday morning and make the appointment. I was very happy to be able to get to see the doctor this week and get things rolling.

To my surprise, Dr Von Mehren told me about 2 clinical trials that Fox Chase was running for which I would qualify. Both are Phase I trials and neither one is specifically designed for sarcoma patients but for advanced cancer patients in general. The first trial involves a drug called patupilone, which is a drug being developed to treat advanced solid tumors developed by Novartis. The second trial involves a drug called SN2310, which belongs in class of cancer drugs called camptothecins and has been developed by Sonus Pharmaceuticals. Both drugs are very new and, as a result, there is little data about how effective either one would be with nerve sheath tumors (or sarcoma in general for that matter). Phase 1 trials are essentially safety trials developed to determine tolerable dosages of a new drug, and do not focus on the efficacy of the drug. This is the downside, really, but I am a good candidate for trials like these because I don’t really have any “proven” treatments to fall back on at this point.

I have decided to enroll in the SN2310 trial, mainly because there is a lot of promise in the camptothecin class of drugs. Camptothecin is a compound that comes from the bark of a tree native to China and has shown tremendous anti-cancer properties by disrupting DNA replication in cancer cells. So there are absolutely no guarantees that this drug will have any positive effect on my sarcoma, but I am happy to be involved with a new and promising drug. There are some typical side effects with the drug (immunosupression etc) but certainly no worse than the traditional drugs I have been involved with.

Over the next couple of weeks I’ll need to have some pre-trial tests conducted and then I should be able to get started. The drugs are administered every 3 weeks, but there are additional blood draw requirements (particularly in the first round) that will keep me busy.

That’s all for now -- thanks for your continued comments, emails, phone calls and prayers.

Seth

Safe at Home and Happy Birthday Jack

2007-02-04T16:21:00.000-05:00

I’m happy to report that we are back safe and sound from our big vacation. We enjoyed 7 days in Florida and everybody had a great time. CFL had provided us with 6 days of tickets to the various parks and it was almost too much to accomplish. I was happy to make it out to the parks on several days and avoided getting completely exhausted by using a wheelchair. CFL is really an amazing organization and if you are looking for a worthy cancer charity, please consider supporting them.

Our trip home was very smooth. Our flight was only half-full and arrived into Philadelphia on time. CFL had arranged for a limo to pick us up and drive us back to my parent’s place. My parents arrived home later the same day and we all agreed it was a vacation to remember. Here are another couple photos from the trip.

On the way to the park.....

Sea World Orlando

Because I had a doctor’s appointment in NY on Friday, my mother and her friend Jo Ann drove the kids back to State College on Wednesday while Jenny and I traveled into NY on Thursday. We drove into the city and stayed at a nice hotel Thursday night that was only a couple of blocks from the doctor’s office. I had a full C/T scan scheduled Friday morning with an appointment at 1pm. We didn’t get to see the doctor till after 3 (which was frustrating). As a reminder, we were doing this scan just a month after my last scan because the doctor was not happy with the way the cancer was responding to the Sorafenib. The new scan showed more of the same. There was no real reduction in any of the pelvic and abdominal masses (the largest of these measures almost 10 x 7 cm), and several metastatic nodules remain in the lungs (the largest measuring 1.3 x 1.2 cm). There are still multiple bone mets located in the lumbar and thoracic spine and pelvis as well. This news was obviously not welcome, but not unexpected either. The overall study results seem to be indicating that for sarcoma Sorafenib will be an agent best used in conjunction with other chemotherapy drugs and not just as a stand alone agent.

So the plan now is to return to my oncologist at Fox Chase (Dr Von Mehren) and begin a new, as yet undetermined, protocol with her. My New York City oncologist was happy to keep treating me, but moving treatment back to Philly will be much easier logistically. There are several chemotherapy options available, and we’ll need to discuss these with the doctor and see what she recommends. I am not happy about returning to a hard line chemo treatment, but I don’t have a lot of other options at this point. Jenny and I remain on the lookout for upcoming clinical trials that might offer new or unique treatment approaches.

In the meantime, I am looking forward to watching tonight’s Super Bowl; we are pulling for the Colts in this house. We celebrated Jack’s 8th birthday this weekend in low key fashion. It’s hard to believe it’s been 8 years since Jenny and I became parents!

I’ll keep everyone posted on what develops with my appointments at Fox Chase. Take care and enjoy the game!

Seth

Greetings from Florida !

2007-01-28T15:28:00.000-05:00

Hello everyone,

I was hoping to post a blog entry sooner but my internet access has been limited. That's one of the few things I can complain about since our vacation is going great. We left State College last Monday, dropped off the dog with a friend, and spent the night at my parent's place in Philadelphia. CFL had arranged for a limousine to pick us up Tuesday morning and take us to the airport. The entire trip went very smoothly. The flight was half full and we got into Orlando right on schedule. The kids enjoyed the flight and were well behaved. We rented an SUV off-site and made our way to the CFL home.

It's a terrific place, 3 bedrooms and well accommodated with everything you might need. Overall, it was a very long day -- traveling really takes its toll on me, and was exhausted. We have been busy every day since then, although I have limited my time at the parks to what I can manage. My parents are here as well, which is a HUGE help. Crowds have been very light at the parks, and the weather has been on the cool side (just a little bit of rain, not bad). Jenny is at Sea World with the kids and my Dad today, while my mother and I are relaxing at their hotel. We've also been to MGM, Epcot, The Magic Kingdom, and Universal Studios. I have been using a wheelchair at the parks which prevents my back from fatiguing too quickly. Tomorrow my parents are leaving to visit some friends further south, and we will probably head out to Universal Studios for another day there.

Even for a healthy family, our schedule has been pretty hectic, but everyone is having a great time. We are flying back Tuesday and things stay busy. I have an appointment (I'm getting a full set of C/T scans) in NYC on Friday and Jenny and I will probably stay in Philadelphia while the kids head home Wednesday. I'll write more when we get back, but here are a couple of photos from the week so far.

Kids at the Airport

With Grammy at the Magic Kingdom

Me with my Parents

The Big Surprise

2007-01-16T13:43:00.000-05:00

I had an excellent visit with my brother last week, and we traveled into New York last Thursday for my 2-week checkup. Driving into the city was a nice change of pace from my usual train trip, and we didn’t encounter too many problems. My blood pressure has finally come down a bit, it’s been elevated since I started Sorafenib. I also seem to be maintaining my weight reasonably well (still around 155 lbs).

In many ways the last 10 months of my life seem like an eternity, and yet they also seem to have flown by. I have spent over 40 days in the hospital, had two major surgeries (both unexpected), had radiation treatment, undergone 6 rounds of chemotherapy, had several blood transfusions, had dozens of scans and x-rays, and had more blood taken than I would have thought possible. Jenny and I have met many doctors, nurses, and medical staff and have gotten to know some of them well. One of the nicest and most helpful people we have met is a social worker at Fox Chase. When my oncologist there recommended that we speak with a social worker I sort of laughed at the idea, thinking “why would we ever need a social worker?”. I couldn’t have been more wrong. Navigating the world of cancer treatment can be overwhelming, even to an internet-savy person committed to educating themselves. Aside from determining the best course of medical treatment (which is a challenge in itself with sarcoma), there is a complex world of medical insurance, disability insurance, social security, medical record management, and cancer support groups that can quickly overwhelm even the most determined patient. I’ve been lucky to have Jenny deal with the majority of this stuff, and readily admit I strongly dislike dealing with any of it.

We met Anjali, a social worker at Fox Chase, during one of my first chemotherapy sessions. She immediately began to educate us on the various programs and services available to cancer patients. While we are lucky to be financially stable and have solid medical insurance (many cancer patients are not so lucky), there are still programs available to help out people like us. For example, the American Cancer Society provides up to $300 per year for travel expenses associated with receiving cancer treatment. In addition, Anjali became our advocate within the hospital, directing us to the correct staff when we had questions, and often filling out hospital paperwork for us and getting various administrative matters resolved quickly. When I was in the hospital, she visited me nearly every day and would always have some tips or helpful advice for whatever was bothering me that day. Needless to say, I have gained a new found respect for what a social worker can provide to a cancer patient -- not just assistance in financial matters, but a friendly face in a scary environment and an advocate in a complex system.

The biggest impact Anjali has had on our lives is related to the “Surprise” I mentioned in my last blog entry. During one of our first meetings, she mentioned an organization called Crossing the Finish Line (CFL) which is located in the Philadelphia area. We had never heard of it, so she quickly filled us in. CFL is an organization that provides young cancer patients an opportunity to escape the world of cancer treatment through expense-paid week long excursions. One of the most common destinations is Walt Disney World since the organization owns a house on the outskirts of Orlando. At the time (this was late May) we thought it sounded great (and too good to be true, really), and Anjalie helped us apply. To qualify you have to be a cancer patient aged 25-49, reside in Pennsylvania, New Jersey, or Delaware, and have a medical recommendation. Happily, we were accepted into the program and told the coordinator that a trip to Disney would be perfect for our family with 3 kids. The big problem, of course, was picking a date that would work. I was in treatment and having all sorts of issues and it seemed like an impossible task to “predict” a week when I would be available and up for traveling. After my stomach/esophagus surgery in September, Jenny and I decided to just pick a date and see what happened. Originally, we scheduled a date in late February, but were later able to schedule a week in late January. So, the big news is that we are planning on traveling to Orlando a week from today for a 7-day trip. We just told the kids this weekend, and they, of course, are just ecstatic about it. It’s been hard “keeping the secret” but I have been reluctant to commit to going until we knew there was a good chance I would be physically up for the trip. Honestly, I still have major reservations about traveling since it wears me out so thoroughly. But this trip is extremely important to me and my family, and I feel honored to have been selected by CFL. The amazing thing is that CFL provides airfare, housing, rental car, tickets to the parks, and spending money – it really is all expenses paid. They own a 3 bedroom house in Davenport, FL, less than 30 minutes from the parks. Because my ability to go to the parks will be pretty limited, my parents will be in town as well, staying at a nearby hotel. They will be a huge help in keeping up with kids. If I spend most of the week at home, that’s OK. We should be receiving all of our tickets and travel arrangements in the mail this week, which will finally make the trip seem more real. The CFL website has lots of good info on the organization, and even has pictures of the house in Davenport. So my eternal thanks to Anjali at Fox Chase, and Mimi at CFL for setting up this amazing trip, it will be a great respite for our well-deserving family.

So we’ll be getting ready for the trip this week, and I’ll be sure to post again before we leave. If anybody wants a set of Mickey Mouse ears, let me know!

Take care,

Seth

Happy New Year

2007-01-05T20:26:00.000-05:00

Well my blog update is long overdue, and I would like to wish everyone a Happy 2007. Personally, it still feels a little weird to think that it’s the year 2007! We had an uneventful New Year’s here, and the kids are now back in school and Jenny is back at work.

Last week I traveled to New York (on the 27th) to get C/T scans done of my chest, abdomen, and pelvis. I then met with Dr. D'Adamo the next day. Unfortunately, the scan results were not as good as I would have hoped. In general, the tumors had grown, although there were several areas of disease that had appeared to shrink. Because I have several tumors in my pelvis and abdomen, as well as lesions on my pelvic bones and spine in several places, comparing one scan to the next can be difficult. The other bad news was that there was disease present in the lung, which has not been previously noted. Some of the nodules showed signs of necrosis (dying), even though they were larger than in October. I am waiting to receive a paper copy of the radiologist’s report to really try to understand what is really going on (It’s hard to get a real accurate idea just on a conversation with the doctor since they are just summarizing). But the doctor's general description was more negative than usual.

After some discussion, we decided to stay the course for another month on Sorafenib, and then do another set of scans in late January. He did give me the option of switching to something else at this point, but I really would like to give it a chance before switching to something more toxic. So for now I am hoping that we’ll see some better results by the end of the month. If not we'll look at some different chemo drug combinations, or perhaps another trial (although I don't have one in mind yet).

One of the reasons I have been slow to post since my visit is that it has taken me some time to “bounce back” since last week. For starters, travel via car, train, taxi and subway really wears me out after a couple of days. Also, although I can’t say I was expecting any significant tumor shrinkage, it does get tough to keep getting scanned and not see better results. That is the reality of metastatic sarcoma – there is no identified cure. Aside from complete resection of the diseased tissue, there is no known treatment that eliminates the disease completely. Over the last 9 months I have accepted this fact, but it’s still hard to live with. I had to think about that for a few days, but a week back at home has helped ground me again and we’ll keep plugging away.

My brother Rob is heading for a visit all next week and will take me to my appointment in New York on Thursday. It will be nice to have a few days with him in a more relaxed environment.

We have a big surprise planned for the kids coming up, but we haven’t told them yet. In the interest of fairness I won’t reveal it here now, but you can expect me to do so in the coming weeks.

That’s all for now, we enjoyed the many holiday cards we received over the last month. (I’m sorry to say we never managed to get a card out). Stay in touch and again, Happy New Year!

Seth

Merry Christmas

2006-12-25T16:08:00.000-05:00

Hello and Merry Christmas to Everyone!

We are enjoying a wonderful Christmas here in State College. Santa was kind enough to visit our house last night, and the kids were up early to check out what appeared under the tree. I hope everyone is able to enjoy this blessed holiday with their loved ones, and enjoy the (temporary) break from their hectic lives.

I am heading to NY on Wednesday for a full set of C/T scans, and should get the results on Thursday. Say a prayer for some good results, it's always a nerve-racking time for me. As long as things are stable I will continue on the Sorafenib trial.

Here are some photos from Christmas Eve. The kids had fun drinking some sparkling cider!

Take care and Merry Christmas!

Love,
Seth

Back to the Doctors

2006-12-13T19:09:00.000-05:00

Jenny and I are headed to New York tomorrow morning for my 2-week visit with my oncologist. We’ll spend the night at a friend’s house in New Jersey and return on Friday. Jenny’s brother Mark will watch the kid’s while we are gone.

The picture is from my company’s holiday party last Friday night, my friend Marc is on the right. They held a Casino Night and I mustered up the energy to attend for a couple of hours. It was a great chance for me to catch up with friends from work, and play some black jack and roulette. You'll notice my hair has grown in to the point where it's looking fairly normal. The drug I'm on causes hair loss in some patients, but up to now it doesn't seem to be effecting me that way.

Last night Jenny and I attended her office’s holiday get together, and I had a chance to meet some of her co-workers. It’s been nice to get out of the house and see some friendly faces.

Happy Birthday to Sarah, my sister!

Take care, I’ll update the blog with any news from the doctor.

Seth

December Update

2006-12-08T12:43:00.000-05:00

It’s been two weeks since my last post, so it’s about time I bring you all up to date. I would attribute my lack of blogging to being lazy and bored rather than not feeling well. I started back on my Sorafenib pills on Thanksgiving Day, but at half the dose (400 mg/day). Some of my previous symptoms have returned, but in general things have been tolerable. The biggest trouble I am having is loss of appetite. It’s a strange feeling to never really be hungry, but between my recent surgery and this drug, I have little interest in eating. I visited the doctor in New York last week and I have dropped a few pounds, so we are considering an appetite stimulant, but these drugs have their own side effects. I also don’t have a lot of energy to really stay as active as I would like. I do feel like my body is slowly getting used to the drug, so I am hoping for a continued return to normalcy.

My trip to New York was pretty uneventful, and I am returning next week for another checkup. Jenny is planning on coming with me, and we’re planning on staying with some friends in New Jersey. I also have a series of appointments the week after Christmas and we are considering trying to take the kids into the city for a day, they are always asking about coming along to New York City.

As far as Christmas goes, we are planning on staying in town and celebrating here. We cut down a large tree at a local farm and now have a decorated tree in the family room; the kids had a great time decorating. They sent off their letters to Santa this week, which were dominated heavily by Star Wars toys.

Well, that’s what is going on here. We got our first snow this week and it’s very cold and windy out today. I hope everyone is enjoying the holiday season and getting there Christmas shopping done early.

Take care and stay in touch.

Seth

Happy Thanksgiving

2006-11-24T10:08:00.000-05:00

I just wanted to wish everyone a very Happy Thanksgiving holiday. I hope you were able to enjoy the day with family and friends. As I have been fighting this disease, my friends and family have given me so much more than I could have ever imagined – I am so grateful. Our family spent the day with friends and had a very relaxing and enjoyable time. My parents are headed up for the weekend and it will be nice to spend time with them without worrying about traveling to the doctor.

Again, all the best to everyone and thanks!

Seth

Sorafenib Update

2006-11-19T16:54:00.000-05:00

As you can see my blogging has become quite sporadic as of late. Here is what’s been going on.

After about 10 days on the drug I started to take a turn for the worse. I was experiencing extreme stomach aches and nausea, along with decreasing appetite. It got bad enough that I was more or less bed-bound and not eating anything. Fortunately, I still complete my tube feeding each night which kept me from losing weight.

After talking with doctor, we decided that I should stop taking the Sorafenib until I started feeling better. I actually traveled to New York this past Friday for my bi-weekly checkup and was able to get evaluated. The doctor isn’t convinced that the Sorafenib was the root cause of my poor condition, as much of it seems more related to my surgery. I’m an unusual case in that respect. I am now doing much better, although I still don’t have much of an appetite. At this point I will probably start back up on the Sorafenib early this week at half the dose (400 mg instead of 800 mg) and see how things go. I am obviously disappointed that my transition onto this drug wasn’t super smooth, but I have no doubt that I can work through these issues.

My trip to New York was pretty uneventful. I took the train from Philly again and am finding this pretty convenient. Dad came along with me and drove me back to State College on Saturday. We enjoyed watching the Ohio St/Michigan game. My grandparents went to Ohio State and my Dad was born and raised in Ohio, so we were naturally rooting for OSU. For those of you following the BCS debates, my personal opinion is that an OSU/Mich rematch would be great, and that Michigan could very likely beat them at a neutral site. It will be very interesting to see how it plays out the other one-loss teams. As usual, somebody is going to feel left out.

Our plans for Thanksgiving are to stay home. Mom and Dad will be coming up for the weekend and we are planning on finding a good Christmas tree at one of the local farms. I hope everyone has a great holiday and is able to spend it with loved ones and family. I’m probably one of the few people in the whole country who won’t be eating too much on Thursday (although I wish that weren’t the case!).

Take care and thanks to everyone for staying in touch.

Seth

Started on Sorafenib

2006-11-04T10:09:00.000-05:00

I had a busy week, traveling to and from New York. The news from the doctor was mostly very positive and I’m feeling a renewed sense of optimism about my treatment. My latest C/T scan showed mostly stable tumor size, with just a little new growth in places. Considering that I’d had only my chemotherapy treatment since August, this was very welcome news. I also had an MRI of my spine while in NY, and everything looked good there as well. I “passed” all my lab tests for the Sorafenib trial and started on the medicine on Wednesday. It’s too early to tell what side effects may manifest, but so far I’m feeling fine. I’ll be returning every two weeks (thru January) for checkups and lab work to support the trial requirements. I took the train into NY and will continue to do so for the most part, it’s very convenient.

I am continuing to gain strength and am finding it easier to stay on me feet for extended periods. My eating habits are still not back to normal, but are slowly improving. We treated the kids to dinner at Applebee’s last night and I even managed to eat most of my Oriental Chicken Wrap (always one of my favorites). I’ve gained a few pounds since I left the hospital and I’m hoping to continue the trend. The picture here is from Thursday of this week.

So that’s the latest on my treatment. Drop me a line when you have a chance and let me know how things are on your end.

Take care,
Seth

Heading Back to NYC

2006-10-30T08:46:00.000-05:00

It's been a while since I've posted -- the good news is that I've been keeping busy and don't have much to report. I had C/T scans done down in Altoona last week and will get the results tomorrow in NY. I'm driving down to Philly today and will take the train in tomorrow. I'm getting an MRI of my spine done as well, and will return Wednesday. If all goes well I'll start taking my twice daily dose of Sorafenib. I am anxious both about the C/T results and starting a new drug.

Unfortunately, I'll miss out on trick or treat here in the neighborhood. The kids are excited and will collect way to much candy, I'm sure. I'll try to post some pictures of the kids when I return.

That's it for now, hope everyone is well. Happy Halloween!

Seth

Doing Well

2006-10-20T12:40:00.000-04:00

I travelled down to Philly Wednesday for follow up appointments at Fox Chase. The surgeon is very happy with my progress and didn't see any complications with my case. I also met with my oncologist there, but since I am starting treatment at Sloan, I won't be seeing her regularly at this point. I'll be home all next week and then travel to Sloan the following week to begin the clinical trial. Overall I am feeling well and gaining strength. I am trying to stay active and keep busy.

Jenny's job is going well and I was able to visit her office this week. Their research lab has recently acquired some sophisticated body fat measuring equipment, called the Bod Pod. It looks like a giant egg, and uses air displacement sensors to accurately determine body composition. My body fat was 17%, which is reasonable. I am still trying to gain muscle mass and will get measured again to see how I'm doing.

Jack has finished up Flag Football, here is a picture from a recent practice. Jenny and Jack are planning on going to the PSU game tomorrow, I'm still not up for it. Spencer will continue with soccer through the end of the month.

That's it for now, take care.
Seth

A New Treatment Approach

2006-10-14T15:49:00.000-04:00

After 3 nights in NYC I’ve made it back to State College courtesy of a ride from my Dad. He is spending the weekend here much to the delight of my kids. I had a good visit with the medical oncologist, Dr D’Adamo, and his staff about enrolling in the Sorafenib trial. I signed the paperwork and should be able to start in early November. I need to get C/T scans completed, and some other tests before officially starting the trial. The doctor was very positive about the drug and felt like it was a good move at this point. Some of his MPNST patients have had good luck with it, although not all. Unfortunately, with sarcoma there are no guarantees. The biggest side effect from this drug is blistering of the feet and hands. The severity varies quite a bit among patients, so I can only hope for minimal effects. Participation will require trips to NYC every 2 weeks for 12 weeks, then once a month.

While in NYC, Mom and I visited the Natural History Museum, which I had not visited since I was a small. We had a nice time and I enjoyed the diversion. We also were not far from the aircraft mishap, and it was a little scary to hear all the sirens etc.

Spencer turned 6 this week, and today we went to Fun Unleashed, a new “Chuck E Cheese-like” establishment in town and had a great time. I am still taking pain medication because my back and abdomen tend to ache when I’m active, but in general I’m feeling well. I am eating well but still not enough to justify stopping overnight tube feeding.

I’ve had some trouble posting photos on the blog lately, but finally found a fix. Here is a picture of my coworkers from SRI the day they worked on my landscaping (it still looks great), and an old family photo sent to me from a cousin in Georgia (Thanks, Rob) that I am fond of -- I’m the one on the right.

Enjoy your weekend and take care,
Seth

In New York City

2006-10-11T15:07:00.000-04:00

Well, despite my best of intentions on relaxing at home this week, I’m currently in New York for a series of doctor visits at MSKCC. I met today with my radiation oncologist, Dr Yamada, and discussed my recent surgery and esophagus damage. He was surprised by the turn of events and said this was the most serious side effect he has ever had with IMRT (lucky me). He is going to review my reports and imaging studies to see what he can learn. I am also meeting tomorrow with Dr Boland, my spinal surgeon, for a follow up.

Lastly, I am meeting Friday with Dr D’Adamo, a medical oncologist who I consulted with in April. He is helping run a clinical trial with a drug called Sorafenib. Sorafenib is a targeted drug, a pill that you take daily, and appears to be generally less toxic that traditional chemotherapy regimens -- its side effects are low to moderate in most patients. With any luck I will qualify for this trial and be able to start treatment within the next month or so. They will probably want me to have recovered completely from my surgery before starting. I’ll need to get a new set of C/T scans and probably come back to NYC every 2-4 weeks (at least initially). I’m currently staying at my Dad’s apartment on First Ave and will be able to stay here through mid-November. After that I have some other options for commuting and staying in New York.

I am excited about trying out a new targeted drug, and hopeful that it will have a major effect on my tumors. I am trying hard to eat plenty and stay active in an attempt to add some muscle to my too-skinny body. The tube feeding continues without much trouble, and I am still catching up on sleep.

We should be home on Friday afternoon, in time for the weekend at home. I should know more about the trial by then, and will post the latest.

Take care,
Seth

Back Together

2006-10-06T16:00:00.000-04:00

I am thrilled to report that Jenny and I returned home yesterday and our family is back together again. I was going stir crazy by Wednesday and managed to convince the doctors to send me home Thursday. I am doing well and getting around the house without too much difficulty. My abdominal incision still keeps me from doing too much.

We had a home health care agency set up tube feeding equipment here at the house, so I can do tube feedings overnight. It’s basically a plastic bad to hold the liquid food, a small pump, and a tube that fits into my J-Tube in my abdomen. I’m currently getting about 1200 calories a day from the tube feeding, and starting to eat more each day via mouth to complete my nutrition. It is a little hard to describe the sensation of my new stomach arrangement, but I am getting used to it. I am slowly expanding the type of food I am eating as well. Jenny and I went to Wegmans today to pick out food that looked good (I even rode the motorized cart around without wounding my pride too much). Hopefully within a few weeks I will be off the Tube feeding altogether, but I am not going to rush things.

Jenny and I were thrilled to see the kids again, and they seem to be accepting our presence after an unplanned multi-week absence. Many thanks to mom, Mark, Ann, Jaime, and Jane for watching the kids while we were gone, it was a huge help. Also a big thanks to the many co-workers from SRI who came out this week to clean up our yard and mulch the landscaping. Everything looks great (and professional) and Jenny and I are so grateful for your efforts. I only wish I could have been around to help out. Another big thanks to all those who sent cards, books, and magazines to me in the hospital. It was always exciting to get mail in the room.

It looks like I am going to head to Memorial Sloan Kettering next week for some follow up appointments and also to meet with an oncologist there about a clinical trial. We may switch directions on the treatment plan, but haven't figured it all out yet. More on this later.

That’s it for now. I hope to report continued progress in the days to come.

Take care,
Seth

Tuesday Update

2006-10-03T16:18:00.000-04:00

A quick update on our status here at Fox Chase. I am getting close to getting discharged, with any luck it will be on Thursday. I am off IV's and just getting tube feedings thru my J-Tube. Unfortunately, my body isn't quite ready for the tube feed and most of it is running right through me. This is very normal, but the doctors want to wait and make sure things clear up a little bit. I am starting to eat small quantities of food and water. This is working pretty well but I can't eat too much at a time. The whole thing is a bit of a pain, but I am told that it gets better. Once I get home we'll have a pump to do the tube feeds overnight, with me eating regular food during the day. We'll see how this works out.

Jenny has continued to stick by my side each day, which I love her for. I am getting a little stir crazy in here and cannot wait to get home. We did get outside today in the 80 degree weather, which was great.

After 3 days without a roommate, I am getting one in my room. To be honest I could use the company and distraction. I hit if off with my first roommate, we really had some good conversations and will try to stay in touch.

That's it for now, hopefully we'll be home on Thursday afternoon.

Seth

On the Mend

2006-10-01T11:44:00.000-04:00

This is Seth writing again. Thanks to Jenny for filling in while I was down and out. I am continuing to progress and recover from my surgery. I am filling my days by walking, reading, sleeping and watching some football. The doctors are still waiting for my newly stretched stomach tube to settle down before I start to eat or drink anything. We’ll probably try tomorrow. The new path is a little more convoluted than the oringinal esophagus so my body will have to learn to use the new one slowly. I am getting fed via a “J-Tube” which goes right into the top of my intestines (the jejunum, in medical terms) from a tube in my abdomen wall. This will continue for some time until I can get my complete nutrition via mouth. The doctors are also waiting to make sure I can digest food via the J-Tube without complications before letting me go home. My best guess is that I’ll be able to head home by mid-week. I am still dealing with some pain in my abdomen from the surgery, but it is manageable. It keeps me from walking as much as I would like though. Jenny is still here everyday, staying at a nearby hospital apartment, and I’ve had a handful of visitors, all appreciated. I’ve received lots of cards and books, my thanks to everyone. The nursing staff here continues to impress me; they really go out of their way to make things comfortable and friendly. Also, a big thanks to Mark, Jaime, and Ann for watching the kids over the last 2 weeks, what a huge help.

Big picture, I’m hoping to return to State College this week and rest for 2-3 weeks before my next round of chemotherapy. Once I get some weight back on and am feeling stronger I’ll need to resume treatments to avoid losing the ground we’ve gained over the summer.

Jenny and I sincerely thank all of you for your support and prayers during this difficult time. Knowing that we are not in this alone makes a huge difference for us. We’ll update the blog with any significant developments and once we have an idea of when we’ll be returning back home.

Thanks again and take care,

Seth

Wednesday 9/27

2006-09-27T14:44:00.000-04:00

Seth is shedding tubes -- two were removed today, including the NG drain (the one in his nose). He successfully swallowed a very nasty-tasting contrast liquid for a swallowing study, and after some initial reactionary gagging, he went on to pass the test with flying colors. His surgeon was standing by and was happy to see that Seth is healing well internally. He will be allowed to try drinking some water tomorrow, and slowly progress from there. I have seen Seth go through a lot these past 6 months, but I am really blown away by his determination and progress after this surgery. I know that his ultimate goal is to get the heck out of the hospital as soon as he possibly can, and if that means he needs to walk laps around the floor, he'll do it!

Progress

2006-09-25T15:58:00.000-04:00

Seth continues to improve each day and has been moved to a room now (309B). The docs seem pleased with his progress so far. He is getting tube feedings and being weaned off the IV nutrition. He's also alert a lot more, reading the newspaper, playing solitaire on the computer, etc. I am brushing up on my interpretive skills, as Seth's new throat is irritated by the NG tube and he is using his voice sparingly and relying on hand motions quite a bit. I have to admit that spending half my life with Seth has not translated into mind-reading skills. I'll blame it on Seth's lack of experience in playing charades.

Continued progress

2006-09-23T17:10:00.000-04:00

Seth continues to do well with his recovery from surgery. He sat in a chair and watched football for an extended period today and, much to the delight of his nurse and his own painful displeasure, he has been productively coughing now and then. This is very painful to Seth's abdominal incision, but very good for clearing out his lungs and preventing pneumonia. Prior to surgery, Seth made the mistake of making me promise to ensure that he does his breathing exercises after surgery, so I have been the recipient of an annoyed glance a time or two today...but it's worth it. If he continues this progress, he should be able to leave ICU at the end of the weekend and move to a regular room. I'll keep you posted!

In the ICU

2006-09-22T19:38:00.000-04:00

Seth's surgery went as planned, and word is that he behaved himself throughout the surgery. He is in ICU now and will likely remain here through the weekend. Thank you for your prayers and please keep them coming. His recovery is likely to be rockier than in the past. He has been talking off and on to his mother and me, and his color is good. So far, we haven't heard him cough once, so we are hoping that this remains the case! With love, Jenny

Surgery Tomorrow

2006-09-21T16:23:00.000-04:00

Hi everyone. This is my first post to Seth's blog, and I will try to post after Seth's surgery tomorrow and let everyone know how he's doing.

We have had another crazy week, as Seth likes to say. Seth is now scheduled for surgery tomorrow (Friday) to permanently bypass his esophagus.

Seth’s esophagus has been severely damaged over the last 5 months from the initial high dose of radiation and the repeated administration of Adriamycin (one of the chemo drugs he had for the first 5 chemo cycles). After endoscopic examination on Wednesday, the surgeon found two major problems. First, a fluid-filled sinus has pushed out from the esophagus wall to about the size of a plum (where the wall had weakened). This alone would warrant removal of the esophagus, and is a life-threatening event in itself. Second, a fistula, or tunnel, has developed between the espophagus and the left branch of the windpipe. This is a more serious condition and complicates matters because the risk of infecting the lungs is very high. It explains very well his inability to swallow anything, and his persistent cough etc. The doctors were somewhat amazed that his lungs were in the reasonably good shape that they are. Frankly, I think it is miraculous that in his immunocompromised state he has not developed anything serious, and is walking around, talking, and not in pain.

Were his esophagus in better shape, it would be completely removed and the stomach stretched up to the throat to create a new connection to the GI tract. Because of the fistula, the surgeons want to seal off the esophagus and leave it in place to minimize the risk of infection in the lungs. This is “sub optimal” but should get the job done. The stomach will still be pulled up to the throat, bypassing the esophagus, and attached to the back of the throat. By not removing the esophagus, they will not have to disrupt the chest cavity at all, and will minimize the risk of spreading infection into the airway. The long term effects essentially amount to a life style change in the way Seth will eat. Small, frequent meals, non acidic food, etc will be the norm.

Additionally, a feeding tube, called a J-tube, will be inserted to allow for direct feeding until Seth can eat 100% through his mouth. This gives us a lot of flexibility in adding more complex foods to the diet while still maintaining a high calorie diet. Recovery in the hospital will probably be 10-12 days, but it is always hard to predict these things. This is a major surgery with the biggest risk being a severe infection developing in the lungs or interior cavities.

The good news is that Fox Chase treats a lot of esophageal cancer. Although Seth's problem in the esophagus is not a malignancy, he is in essence getting the kind of operation someone with esophageal cancer would have. Seth's surgeon is heavily experienced and published, and we have the utmost confidence in his judgement and skill. I would guess that he's around 60, so he's been taking out esophaguses for a long time. This type of surgery is technically complex, so we are relieved that we are already at the right place and don't have to travel even farther from home to have the "right" surgeon take care of Seth.

Needless to say, we have had to process a lot over the past week, and this whole long episode with Seth's esophagus has been a major setback to say the least. Seth is looking and feeling remarkably well right now. He has lost a significant amount of weight over the last month b/c of his difficulty, and eventual inability to swallow. I am amazed at how Seth's body has compensated for this major defect in his esophagus and trachea.

Seth will certainly be out of commission for a while, but I know that he would definitely like to get some mail while he is here. The address here is:

Seth Edmondson (patient)
Fox Chase Cancer Center
333 Cottman Ave
Philadelphia, PA 19111

I want to make a hasty apology to our friends and family. Because these last few weeks have been so incredibly busy and hectic, we have failed to acknowlege packages, emails, and phone messages. I know that you all understand, but I want you to realize how much your love, generosity and concern mean to us. Thank you!

Please keep Seth in your thoughts and prayers. My beautiful husband continues to amaze me with his strength and grace throughout this ordeal. I know that we both continue to draw our strength from all of you.

With love,
Jenny

Home Nursing

2006-09-14T19:59:00.000-04:00

After some digging around, we found out how to get insurance to cover home nursing visits. Today we had a very nice local nurse come and give me a liter of saline via my port, and I'll get 3 more liters over the next week (1 liter every other day). This has made a huge difference in the way I feel, as I was getting dehydrated and dragging. Feel like I should do this for any chemo treatment. Jenny even can change the IV bag on the portable pump. It's very easy to do, actually. The nurse has to access the port, and leaves the tubing for the week.

I still have a hard time swallowing without coughing, but I've got time to figure it out and let the cough heal. My brother has left, but now my Dad is here through the weekend to helpout. That's all for now, C/T scan down in Altoona tomorrow, although we probably won't hear the results til Monday.

Seth

Wednesday Sept 13 Update

2006-09-13T12:47:00.000-04:00

A quick update. I am back at home but not out of the woods. My ifosfamide treatment resulted in some pretty severe “mental confusion” symptoms. This is a common effect from this drug – I didn’t know the date, couldn’t, answer simple questions or explain simple concepts. The effects have largely subsided but I ended getting about 5/7th of the dose planned. It was a very scary experience for me, and I felt like I had Alzheimer's.

I am not tackling continued GI tract issues, largely in the form of trouble swallowing and a wicked cough. I am trying hard to stave of dehydration along with Jenny. I am getting a C/T scan done this week to check my chest, but I am hoping to avoid admission to the hospital.

Overall, it’s been very stressful and I am keep waiting for things to get better. All for now, please send emails vs phone calls please.

The Latest

2006-09-07T11:01:00.000-04:00

I’ve now been home from the hospital for a week and my recovery continues slowly. The cumulative effect has been good, though, and I am feeling much better than I was a week ago. It has now been 6 months since we discovered my recurrence. It is hard to put those 6 months in perspective, but I feel proud of the way our family has handled the challenges. The last month has been very demanding physically and emotionally, and I remain hopeful that we will get some good news soon.

Jenny started work this week at PSU and is confident that this job is going to be well suited for her. Getting 3 kids out the door in the morning (and herself to work) has been a big adjustment, as has being home alone all day for me. Nathan is enjoying his preschool and Spencer and Jack are finding Kindergarten and 2nd grade to be a blast.

I am heading down to Fox Chase tomorrow morning (Friday) for my next 4-day treatment. I’m not anxious to get back into a hospital gown and bed, but as long as I have energy and not much pain I’ll make the best of it. There will be some good football to watch over the weekend. My brother Rob is heading out to keep me company over the stay and drive me back to State College next Tuesday.

Jenny and I continue to thank you for your prayers, good wishes, emails, phone calls, and support – it really makes a difference for us.

Take care,
Seth

Back Home.....Again

2006-09-02T14:18:00.000-04:00

I am happy to report that I am back in St College after 10 days in the hospital. I never did end up getting chemotherapy, my body just wasn’t up for it. I still have an ulcer, they heal very slowly. I am getting over my pneumonia, and that is what kept me in the hospital for so long. It’s hard to get over the coughing and they want to make sure that your lungs are healing. I also had two very trying roommates while at the hospital that made it very difficult to sleep well. I am now eating and drinking OK, just trying not to overdo it. My energy level is slowly returning as well.

I will be heading back to Fox Chase late next week or Monday the 11th to get admitted for chemotherapy. I am really hoping to be doing better by then so that I can handle things OK. It looks like we will be going to an ifosfamide-only treatment, still 3 and half days in length.

I am woefully behind on returning emails etc. Please forgive me for now; I just don’t have the energy to write much. I am enjoying the fact that college football is now underway; there are lots of people in town for the Penn State game today (despite the heavy rain).

Take care, I’ll post in a few days and let you know how I am feeling.

Seth

Sunday Update

2006-08-27T09:08:00.000-04:00

Well I’m still in the hospital and feeling so-so. I had my endoscopy done Tuesday night and they discovered an ulcer in the esophagus wall. It was about 2cm in diameter. They decided to insert a feeding tube while I was still out, so since Wendnesday I have been eating high nutrition liquid food through my tube into my stomach. This is intended to give my ulcer a break for irritation. It runs up through my nose and down the back of my throat – it is not as uncomfortable as it sounds. I don’t taste the food, but I don’t mind for for now. They are planning on doing another endoscopy Monday morning to re-examine things.

The other issue is that I have developed “coarse” respiration, an occasional low-grade fever, and a wicked cough – all signs of pneumonia. My chest X-rays have back clear however, and they haven’t discovered a specific bacteria in my system. I am getting a couple different respiratory treatments to help things along. The worst part is the cough, since it keeps me up at night and just wears me out.

So, as you can see, staying in the hospital isn’t doing me any favors. Tomorrow will be a big day to determine what the next steps are. I am still hoping to do chemotherapy this week but am currently in no shape to do it.

Re-reading this entry, I sound more like an 80 year old than a 35 year old, I hope that isn’t the case next time.

That’s all for now.

Seth

Ups and Downs

2006-08-22T15:38:00.000-04:00

It’s been another couple of crazy days. My scans showed that all tumors were stable (same size) which I was very happy to hear. I am confident that the tide will turn eventually.

My oncologist delayed chemotherapy while we treated and investigated my esophagitis. I got admitted to the hospital and got put on a pain pump, which has made a world of difference. I met with some GI doctors and got put on some anti-viral and anti-fungal medications to treat some of the common causes of esophagitis for chemotherapy patients. Depending on how things go, I may have an endoscopy done in the next day or two. I slept reasonably well Monday night in my narcotic state.

Things took a turn for the worse this morning when my resting pulse rate went up to near 200 and was erratic. I got moved to the 3rd floor for lots of drugs, testing, and analysis by the cardiac folks. I’m happy to report that my rate is now back to normal. The doctors call this condition atrial fibrillation. The jury is still out on what’s going on so hopefully I’ll have more to post later in the week.

Based on the way things are going, Jenny is going to stick around here for at least a couple more days. I am resting comfortably and not in a lot of pain, so I’m happy. I’ll have more to report on my next treatment soon.

Seth

Not feeling well

2006-08-19T20:17:00.000-04:00

I am currently down in Philly staying at my parent’s house. It’s been a rough week for me -- my esophagus has gotten much worse, as bad as it’s ever been. At times the pain is quite severe. I managed to get in to see the doctor yesterday while I was in for my C/T scans at Fox Chase. I got some IV fluids, and I am taking percocet and using a strong medicated mouthwash. Unfortunately I am able to eat very little. I am hoping things will improve before my treatment on Monday. Depending on the results of my scans, the doctor will reevaluate the chemo drugs I am currently taking. The doxorubicin is what is causing the espophagitis, and because I am nearing the lifetime limit of dosage for that drug, she may take me off of it.

The kids had a great time at Hershey Park on Wednesday. The day was a little much for me, and I spent my time moving from one shaded park bench to the next. I was also able to fit in a brief visit to SRI on Thursday and catch up with my co-workers. I wasn’t feeling great, but it was very nice to see everybody. My friend Ted came up to visit Friday morning and drove me down to the train station in Harrisburg (thanks Ted!) and I took the train to Philly from there.

I am hoping to be able to post some good news in a few days about my latest scans. Say a prayer and think positive thoughts, because I could really use some good news.

Jenny came down from State College today with the kids, so we are all back together again. Nathan is turning 3 tomorrow, so we’ll be celebrating that here with my parents (complete with a Fudgy the Whale cake from Carvel!)

That’s all for now, I’ll post again soon.

Take care,
Seth

MPNST

2006-08-13T19:37:00.000-04:00

It’s the end of a beautiful weekend here. We attended the State College Spikes game last night (the Spikes are a recent addition to State College, they are a Class A affiliate in the St. Louis Cardinals organization). The stadium is brand new and very nice.

My esophagus is acting up again, today is the worst it has been in some time. One of the drugs I am taking, doxorubicin, is known to “recall” previous side effects from radiation treatment. So every time I take the drug, it tends to produce similar side effects from when I had my radiation treatment. One person on the Sarcoma list serve we monitor likes to call radiation the “gift that keeps on giving” for this very reason.

I have never previously discussed the specifics of my particular cancer diagnosis, Malignant Peripheral Nerve Sheath Tumor, or MPNST. It is a subtype of a group of cancers known as Soft Tissue Sarcoma. Sarcoma, as a group, is relatively uncommon in the US, comprising about 1-2% of diagnosed cancers. MPSNT comprises about 5-10% of sarcoma diagnoses. If you do the math, this approaches 500 to 1,000 persons per year in the US.

One of the difficulties in researching MPNST is that it is a relatively recent term, replacing what were previously known as malignant schwannoma, neurofibrosarcoma, and neurogenic sarcoma. Additionally, because it is an uncommon form of cancer, the number of research studies and trials is limited.

The body’s nervous system is divided into the central nervous system and the peripheral nervous system. The central nervous system is comprised of the brain and spinal cord (which carries messages to the brain), while the peripheral nervous system is comprised of the vast network of nerves that carry messages to and from the central system. The cells that carry these messages are called neurons. One of the components of a neuron is the axon, a long fiber which carries messages away from the cell (see diagram below). The axon is protected by a lipid layer known as the myelin sheath. It is the cells of this nerve sheath that mutate in MPNST. (Interestingly, it is the destruction of large portions of the myelin sheath that characterize Multiple Sclerosis.) As evidenced by my own case, MPNST can be difficult for a pathologist to diagnose conclusively. My original pathologist diagnosed my cancer as leiomyosarcoma, but subsequent studies have indicated MPSNT as being much more likely.

One other interesting note -- up to 50% of MPNST diagnoses are associated with a genetic condition called Neurofibromatosis, also known as von Recklinghausen disease. I don’t have that genetic condition, so I fall in the half of cases with less certain causation. Since my original tumor was located with my abdominal muscle, I can only assume it was a nerve sheath within that muscle that mutated and grew.

If you are looking for more detailed info on MPNST I can recommend these 3 links

Liddy Shriver MPNST Page
Radiographics Case Study
Maxilofacial Center Page on MPNST

We're heading down to the Harrisburg area on Tuesday and Wednesday, and hoping to make it to Hershey Park. Hope everyone has a great week.

Seth

Out of the House Today

2006-08-11T20:44:00.000-04:00

It's been almost a week since my last treatment ended and I'm starting to get my energy back. I've taken a couple walks and today even accompanied the kids and some friends to a kid's fair in town. We are planning a trip to Hershey Park next week, I'm hoping to have enough energy to keep up with the kids. I won't be riding any roller coasters, though.

I've got another set of C/T scans scheduled for a week from today. I'm trying my best not to think about it too much but it's a bit difficult. Hopefully I'll have some good news to report.

We continue to receive lots of kind and generous support from friends, neighbors, and family. This really helps keep Jenny and I going through all of this, and we continue to say "thanks" to all of you.

I've included a few pictures from our outing today. This is our family with our friends enjoying lunch.

Here are my three sons -- it's still hard to get Nathan to cooperate :)

Here is Jack, enjoying the moonbounce.

That's all for now, hope everyone has a great weekend.

Seth

Back in My Lazy Boy

2006-08-06T11:52:00.000-04:00

I'm back in my giant boat of a Lazy Boy, and slept soundly last night. Thanks to Dad and my brother-in-law Dave for getting me home yesterday. I received lots of pictures from various people last week and thought I would share.

Our friends Tom and Joy, former neighbors in VA, visited us at Sea Bright last week with their 3 kids. We had a great time catching up.

Our 3 kids had a great time with my Aunt Betsy and Uncle John, who came down for a visit from Rhode Island. Here John is teaching Spencer how a well-timed wink can win over the ladies.

Here's our family's house in Sea Bright.

Here I am, not catching any fish.

We missed our friend Lara's wedding last weekend. Here are Jenny's friends Hilary, Jenn, Lara (looking quite stunning as the bride), and Lata. Our congratulations to Lara and Jason, sorry we missed the big event.

Lastly, here's me at Fox Chase this week, mustering a smile. Can't say I'm in any hurry to get back there, but I'm getting to know the staff pretty well and they treat me great.

In the Hospital......Again

2006-08-02T18:52:00.000-04:00

After waiting for a day, I was finally admitted late Tuesday morning to Fox Chase. I got to spend Monday with Mom and visit my sister and my grandfather, so everything turned out fine. As a reward for my patience I was assigned a private room (there are only 4 in the whole hospital), which is very, very nice. My chemotherapy got underway yesterday afternoon, which means I should be discharged Saturday around noon time. So far I am feeling well and keeping busy with email, DVD’s, and reading. I try to take a walk every few hours, dragging my IV pole along. The picture below is of me and my friend Kurt down at the shore. I have some more pictures I'll post soon.

I was speaking to my Grandmother a few weeks ago, and she had recommended reading and memorizing some poetry for when I’m feeling to lousy to read. I don’t normally read much poetry, but I found a Pocket Book of Verse at my parent’s house. I have enjoyed reading through the various poems, you find a lot of snippets that are familiar and it’s nice to learn the poems from which they come. I have found two poems that struck home with me and my current situation. The first is a sonnet by George Santayana called O World. Santayana was Spanish born and educated in America in the late 1800’s. He was a prolific author, and is best known for his "Those who cannot remember the past are condemned to repeat it" from Reason in Common Sense. The sonnet reads…

O world, thou choosest not the better part!
It is not wisdom to be only wise,
And on the inward vision close the eyes,
But it is wisdom to believe the heart.
Columbus found a world, and had no chart,
Save one that faith deciphered in the skies;
To trust the soul's invincible surmise
Was all his science and his only art.
Our knowledge is a torch of smoky pine
That lights the pathway but one step ahead
Across a void of mystery and dread.
Bid, then, the tender light of faith to shine
By which alone the mortal heart is led
Unto the thinking of the thought divine.

I like this poem because it recognizes some of the limits of science and knowledge (i.e. we still don’t have a medical cure for cancer), and stresses the importance of faith and self-belief, which can take you long way when fighting a disease.

The second poem is well known and often quoted -- Invictus (Latin for “unconquerable”) by William Ernest Henley who wrote it from a hospital bed while fighting tuberculosis. This poem is much more stoic than the first, but if you are feeling kicked around and like the odds are against you, this poem is hard to beat.

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud,
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

As a side note, Timothy McVeigh quoted this poem as his final statement before his execution, inappropriate for a coward and murderer in my opinion. It upset a lot of people when he did it, but it doesn’t ruin the poem for me.

Well, enough poetry for now. If you have any favorite poems or verses, please send them my way. Hope everyone is staying cool, fortunately I’m stuck in the hospital till things cool off.

Take care,
Seth

Back from the Beach

2006-08-01T09:39:00.000-04:00

It’s been a while since I’ve posted an update. We spent a wonderful 8 days in Sea Bright and had a great time. We had a number of friends visit and spend time with us there, and the weather was very cooperative. Jack, Spencer and I went fishing with my Uncle Alan and caught some fluke, and we got in lots of time at the beach. My back is slowly getting stronger, and I am finding myself able to do more and more. Jenny has since returned to State College with the kids, and I am now in Philadelphia.

I was supposed to get admitted to Fox Chase yesterday for my 4-day infusion, but the hospital didn’t have any beds available (it is a 100-bed hospital). I am currently waiting to hear from them about getting admitted today. The nice thing is that I was able to spend the day with my Mom instead, and visited my sister and grandfather as well. While at the hospital I did visit with my oncologist. I will be getting another C/T scan in 3 weeks to see how things look. She also is increasing my ifosfamide dose since I tolerated the first round of AIM so well. Hopefully this won’t cause too much trouble, but I’m willing to put up with the side effects if it is going to help shrink the tumors.

In other news, it looks like Jenny will be starting some part-time work at Penn State in September. The University conducts a lot of childhood obesity research, so this is a chance for Jenny to use her nutrition education and experience as a parent in a professional environment. Jack is attending Flag Football camp this week and will be playing in a Flag league this fall. He is a big football fan and is very excited about getting to play.

I am way behind on returning emails (thanks to my vacation), but I plan on catching up while in the hospital.

Take care,
Seth

Walmart

2006-07-21T14:58:00.000-04:00

I was talking to a family friend recently who was expressing her frustration about a new Walmart being built in her town. The site they had chosen required the destruction of a historic building she had always admired, and she questioned aloud whether Walmart was really as “evil” as they sometimes seemed to appear. This question reminded me of a time when, during one of her pregnancies, Jenny cried hormone-driven tears of happiness after watching a Walmart commercial where the yellow happy face bounces around the store, generously lowering prices for the customers. Fortunately, this effect was only temporary.

In my experience, Americans generally have negative opinions about Walmart. And yet we just can’t seem to help ourselves when it comes to taking advantage of the low cost goods they offer. A quick internet search reveals a large number of sites dedicated to exposing “the truth” about one of the world’s largest corporations. Some are more rational than others, but it makes for good reading.

So what are the facts?

-- Walmart is one of the top 5 corporations in the world (along with the major oil companies) and has annual sales around $250 billion
-- As of July 2006 Walmart had over 3200 stores and super centers in the US, with over 1.3 million employees.
-- The Walton Family (Sam Walton’s widow and 4 kids) owns about 40% of Walmart Stock and is worth around $100 billion
-- The average Walmart employee makes about $8.00 per hour.
-- Walmart is the single largest importer of foreign-produced goods in the US, and, if treated as its own country, would rank 5th in Chinese exports.

Like any publicly traded corporation, Walmart’s primary goal is to maximize profits for its shareholders. Walmart is ruthlessly efficient at keeping costs low, allowing them to sell goods cheaper and still turn a profit. The methods they use to accomplish all of this tend to be the focus of complaint. They include low employee wages, expensive health coverage for employees, using their massive purchasing power to force suppliers to cut costs at their expense, vehement anti-union policies, and a long list of other sinister management practices. Here’s a link to a great article ("The Walmart You Don't Know") that I read a few years ago in Fast Company. It outlines the issues far better than I ever could, and provides some good examples of just how Walmart operates

Jenny and I occassionally shop at Walmart, but my personal approach is to shop there only if they have a particular item I need that I can't find somewhere else. I’m convinced that Americans could do without much of what they purchase at Walmart (and other chain retail stores), and they would undoubtedly be better off saving their money for another day. Walmart and other super stores excel at prompting the impulse buy, so just get in and get out before you end up buying that $2.97 gallon jar of pickles that you don't really need.

One other note…..make to sure the catch the end of the Tour de France this weekend. American Floyd Landis followed up near-disaster on Wednesday with sheer determination on Thursday and sits just 30 seconds off the lead. With a strong time trial on Saturday he could be wearing yellow at the Champs-Elysees on Sunday. Also, Tiger Woods is at the top of the leader board at the British Open, so there should be some good golf to see this weekend.

Our family is heading off to Sea Bright Saturday morning, so I’ll probably check in from there. I am feeling pretty good and trying to keep busy. My esophagus is acting up again, but it is not as bad as it’s been in the past.

Take care,
Seth

In State College Again

2006-07-17T12:18:00.000-04:00

I am now back in State College, I was discharged Saturday morning. My brother and my cousin Joe managed to get me back home without too much trouble. I slept about 16 hours on Saturday night, and I am generally feeling quite tired. Fortunately I have not had the nausea that I experienced in previous cycles. My stay at Fox Chase went smoothly and there are definite advantages to getting my treatments as an inpatient. I was very thankful for the large volume of email I received; it really helped me stay positive and connected. I haven’t been able to respond to everyone yet, but I’ll catch up soon. I also enjoyed catching up with Chris, and old friend from the Navy and now a pilot for Jet Blue. I’ll be resting at home this week, and then we are planning on heading down to Sea Bright next week. I’ll be back at Fox Chase on July 31st for my next round, it seems too close already. I’m not sure when my next set of C/T’s will take place, but it may be as soon as mid-August.

My twin brother is often asked if he feels at increased risk to get sarcoma since it happened to me. While he was at the hospital Rob met my oncologist, also an identical twin as it turns out, and she assured him that he shouldn’t worry or run out a get a C/T scan. Sarcoma is very uncommon and there isn’t any data to support a strong genetic link.

The Zidane head-butt has taken on a life of its own, and here is a funny link that displays some creative editing.

It’s supposed to hit 95 here today, and it sounds like it’s hot all over. Hope everyone is well, I’ll continue to keep the blog updated.

Take care,
Seth

In the Hospital

2006-07-12T03:56:00.000-04:00

I was admitted to Fox Chase yesterday (Tuesday) and started my infusion mid-afternoon. It’s an 84-hour process, which puts me into Saturday morning to finish up. I’ve got two IV’s, one in my chest port and one in my arm, each with a different drug. So far I feel fine; it will probably take a day or two to kick in. The hospital is very nice, and the staff is great – friendly and helpful. My biggest surprise was finding that the rooms have wireless internet, so I can spend lots of time on my laptop and stay in touch. Jenny spent the day with me and is taking the kids back to State College in the morning. My brother is extending his stay to help me out at the end of the week.

As I’ve had time to process the latest test results, I’m feeling a little more positive. The large tumor had stopped growing, which was our (and the doctor’s) biggest concern. Aside from the inconvenience of staying in the hospital, this new protocol is very similar to the old. Ifosfamide has had some good results with MPNST in recent studies (albeit with limited sample sizes) and is generally a quicker acting drug. We’ll probably do another set of scans after two cycles of this. The goal is still to get to where surgery is an option. I will probably post a little more detail about MPSNT in the near future; it’s hard to find good information on it, though.

The picture above is of my parents, our family, my grandfather, and my brother’s family (wife Jamie, kids Peter and Abby). We were able to catch up with them down at Sea Bright this weekend. Getting 5 kids to smile at the same time did not prove feasible!

Please drop me a line at seth.edmondson@gmail.com and let me know what you are up to. I’ve got 84 hours to kill in this room and would love to hear from all comers. Take care.

Seth

Change of Plans

2006-07-10T22:39:00.000-04:00

Well I was excited at the thought of posting some good news here today, but things are only “so-so”. The latest C/T scans showed that the primary tumor was about the same size (about 9cm) and that a new 2cm tumor had grown nearby. We discussed options with Dr von Mehren and we decided to switch protocols. The AIM protocol uses adriamycin and ifosfamide. I am currently on adriamycin with the current protocol, so this is essentially adding in the ifosfamide and taking away the ET-743. I have to admit I am very disappointed that the experimental drug wasn’t that effective, but that is the nature of treating this disease. The fact that the primary tumor has not grown is a positive thing. The downside is that this protocol is administered over 4 days and requires an inpatient stay every 3 weeks. I’ll be admitted into Fox Chase tomorrow and probably stay through Saturday. This protocol has similar side effects, but also can affect the bladder which requires more constant attention.

The past several weeks have been very hard for us, and it looks like we still have a long road ahead of us. We have been on the receiving end of some unexpected and generous support from friends and family lately, and Jenny and I are so appreciative. It helps us out in a very practical way, but more importantly reminds us that we have so many people who care about us.

If you didn’t see it, Italy won the World Cup on Sunday in a penalty shootout. I was a little disheartened to see Zidane (from France) get sent off for a vicious head butt late in the game (see this link for the video). Now I need to find another distraction!

Jenny will be heading back to State College on Wednesday, but I probably won’t return till this weekend. I’ll let you know how this week’s treatment goes then.

Take care and stay in touch,
Seth

Happy Fourth!!

2006-07-04T14:03:00.000-04:00

Happy 4th of July! I hope everyone is finding time to enjoy the holiday. We all recognize the 4th as a celebration of our Nation’s independence -- here are a few facts about the holiday that hold some interest:

-- Thomas Jefferson wrote the Declaration of Independence during June 1776 as part of the Second Continental Congress. The official resolution for the Declaration was approved on July 2nd, and the final draft of the Declaration was approved on July 4th. No one actually signed it on the 4th, and signatures were added into August.

-- Philadelphia held the first 4th of July celebration in 1777.

-- Congress declared the 4th of July and official national holiday in 1941.

-- Both John Adams and Thomas Jefferson (2nd and 3rd US Presidents and long-time political rivals) died on the 4th of July in 1826 (50 years after the original Declaration). James Monroe (the 5th President) also died on the 4th in 1831.

-- The cornerstone of the Washington Monument was laid on July 4th, 1848 with President James Madison in attendance.

-- Hawaii (the 50th State) was granted Statehood on the 4th in 1960.

-- New York City hosts the largest 4th of July fireworks show (Macy’s 4th of July Fireworks Show). They launch over 30,000 shells at a rate of about 1,000 per minute. As a comparison, the average fireworks show in the US has fewer than 1,000 shells.

-- State College hosts the nation’s largest all-volunteer fireworks show, a musically synchronized display with around 12,000 shells total. Pretty impressive for central PA!

I’ve always been a big fan of fireworks, but we’re still not sure if we’ll brave the crowds tonight. We’ll be heading back down to Philadelphia on Thursday. I am getting a full set of C/T scans on Friday and my 4th infusion on Monday. I’m hoping to have some good news to report once we get the results of the latest scans.

There are only 4 teams left in the World Cup (Germany vs. Italy, and France vs. Portugal). France knocked out favorite Brazil this past weekend in a very exciting game. Personally, I’m routing for host Germany.

That’s all for now, hope everyone enjoys the holiday.

Seth

World Cup Thoughts

2006-06-27T17:36:00.000-04:00

I’ve been watching the World Cup matches consistently and have been forming some thoughts on the goods and bads of the whole affair. Overall it’s been very entertaining and some big matchups are forming in the brackets (e.g. Germany-Argentina and France-Brazil). The US had an early departure after a pretty dismal performance -- they just never got things going. Most people probably don’t have the time or interest to watch, but right now I have that luxury (in fact, it’s kept me sane this past week). FIFA has a good web site with lots of interesting features here.

Goods

1. No commercials during play: While the world cup is as commercialized as any American sport, at least ESPN has the decency to provide continuous coverage for each of the 45 minute halves. In soccer the clock just keeps running, which means no timeouts or excessive attention to off-the-field activity.

2. Quality of Play: World Cup soccer is continuous and dynamic, but it can also get pretty boring. On the other hand, things can get exciting real fast, and there have been some amazing goals scored. Almost all of the players in the Cup are skilled professionals in the international arena, which means that the soccer is at its best. It is hard to appreciate the ball handling skills of these players, but even the average players can do things with the ball that amaze. They are also highly motivated since winning the World Cup for your country is considered soccer’s greatest prize.

3. No sideline interviews or “human interest” stories: I’ve long been unimpressed with the “sideline” interview so common in American football, particularly the halftime coach interview (they are often painful to watch, honestly). The World Cup has none of that, and aside from a little color commentary from the announcers, little is revealed about the player’s personal lives or interests. The focus is almost entirely on the players’ skills and the game at hand.

4. Fans: The fans at the games are colorful and energetic, almost to a fault. The singing makes for a particularly festive atmosphere, even though you can never tell what they are saying.

Others

1. Overdramatic players: Anyone who watches a World Cup game can’t help but notice the great effort that players make to communicate great pain and injury every time they fall to the ground. Clutching of feet, ankles, knees, and the head after incidental contact is common, and easy to see on the instant replay. 9 out of 10 times they are ready to get up and keep playing, without a scratch or limp to be seen. This has always been one of my biggest problems with the game – it makes the players look like wimps, and leads to unnecessary fouls and cards from the referee (see below). If you want to see real pain and suffering, just watch an episode of America’s Funniest Videos.

2. Referees and Yellow Cards: One of the hot topics this Cup has been the record number of yellow and red cards given out by referees (cards are given for flagrant fouls and unsportsmanlike conduct). I don’t for a second envy any referee (in any sport), it’s a tough and thankless job where nobody thinks you’re doing things right. That being said, there have been some pretty poor calls and poorly officiated games where the referees have been instrumental in the outcome of the game. The threshold for cards has been set pretty low, and players with 2 yellow cards have to leave the game and miss the next game. It’s a tough price to pay for aggressive play. In the end, I imagine the best teams will make it through to the final, and the refs will stay on top of things.

I am hanging in there, but it has been a very long week for Jenny and me. My blood counts are low again, and I just don’t feel that well. I’ll try to post again this weekend, we haven’t made any definitive plans for the 4th yet and I’m not sure what we’re doing or where we’ll be next week.

Hope you are all staying dry and cool,

Seth

Back Home

2006-06-21T19:19:00.000-04:00

We've returned to State College and are very glad to be home. I'm feeling pretty poorly and am resting quite a bit. We get lots of positive feedback from the pictures I post, so here is another one from the other day. You can see my hair has thinned out quite a bit, but its not all gone either!

Seth

3rd Infusion Complete and Good News about my Spine

2006-06-19T19:29:00.000-04:00

We are back in Philadelphia and I had my 3rd infusion at Fox Chase this morning. So far I am feeling fine, but it usually takes a day or two for things to kick in. As expected, they lowered my doses because of issues with my liver enzyme response in week 1 and low blood counts. It’s not a big deal, and I’m hoping it helps with tolerating this medicine. I return tomorrow to get my Neulasta and Aranesp shots, which help put blood cell production (white and red, respectively) into overdrive. We should be heading back to State College on Wednesday if all goes well.

We had a great week in Sea Bright, NJ, the weather was terrific. The kids had a great time and spent a few days learning how to cast a spin cast rod. The kids also locked the keys in the minivan, but AAA came to help us out. Jenny and I headed to NYC on Wednesday and Thursday and met with my radiation oncologist and surgeon. I had a spinal MRI done and they were both very pleased with the response of the remaining tumor in the vertebrae. This is great news and a testament to the efficacy of IMRT in regions around the spine. We’ll go back in 4 months to see what things look like then. We also had a nice (but brief) visit with our friends Kurt and Lisa out in Long Island, thanks so much for the hospitality.

That’s all for now,
Seth

Off to the Shore

2006-06-12T11:44:00.000-04:00

We're off to the shore today, with a trip to NYC later in the week and then on to Philadelphia next Monday.

The pictures are from this weekend -- Spencer's soccer game.

Take care,
Seth

Last Day of School

2006-06-09T21:40:00.000-04:00

The week seems to have passed by quickly here in State College. We were fortunate to have a friend from our San Diego days visit us with her 3 children this week, which was a lot of fun for the kids and allowed us to catch up with an old friend. Jack and Spencer had their last day of school today, Jack will be starting 2nd grade in the fall and Spencer will be starting kindergarten. Nathan will be starting preschool this fall as well. It’s been said a million times, but it’s hard to believe they are growing up so fast.

I watched the two World Cup matches today, which by normal standards were high scoring games (Germany beat Costa Rica 4-2, and Ecuador surprised Poland 2-0). I don’t normally have the patience to watch a 90 minute soccer game, but there is something about the World Cup that really makes it exciting. The US has a tough bracket, but they have a solid team with lots of talent. Brazil is the clear favorite, with enough talent to field two solid teams. I usually like to root for the underdog, and a friend of mine from Scotland informed me that under no circumstances was I to root for England (and gave me a long list of good reasons why this is so).

My blood counts (both red and white) have been very low again, which means I am trying to avoid human contact as much as possible. There are several different types of white blood cells that serve different functions, but one common type is called a neutrophil. Neutrophils play an important role in fighting off bacterial infection. As an example, my neutrophil count from yesterday was 200 cells per microliter, where a normal range would be 1800 to 7800 cells per microliter. I suspect that my chemotherapy drug dosages will be reduced slightly for my next treatment as a result of all of this. The good news is that I have avoided getting sick so far, and am feeling reasonably well despite the low counts.

Jenny and I will be doing a good bit of traveling over the next week and a half. I have two follow up appointments in NYC at Sloan Kettering on Wednesday and Thursday of next week. I’ll get an MRI of the spine to check out my vertebrae and see how things look after the radiation treatment. Since the kids are done with school we’ll head to my grandfathers house at the beach in Sea Bright and spend the week there. Jenny and I will ferry in to Manhattan and have plans to spend Wednesday night at a friend’s house in Long Island. We’ll finish the week in Sea Bright and then head to Philly for my next infusion on the 19th. The weather looks promising for a week at the beach, and it should be relatively quiet there. So if you’re trying to get a hold of us it will be best to call our cell phone.

All for now -- take care and be well

Seth

Back at Home

2006-06-04T12:34:00.000-04:00

A quick note to let everyone know that I am back in State College and doing “OK”. We returned Thursday afternoon without any major difficulties from my treatment. I am feeling completely exhausted, but my nausea has been less severe this time around. Today is the first day that I even felt like typing on the computer. Jenny and I watched “Who’s Afraid of Virginia Wolfe” yesterday, which I really liked, but its deeper meanings were probably lost on my engineering brain.

I received some inspirational magnets from a friend this week, one of which included the Winston Churchill quotation “If you’re going through hell, keep going”. I am taking this one to heart this week, since at times I think I can feel the flames around me. Not to worry, I know there are better days ahead.

I added in a feed from Gullible Info on the left hand side of the blog, if only to give people something to read when they find there are no updates to the page. I can’t state with any certainty that the info posted there is actually true, but it might make you think.

Hope everyone is enjoying the warmer weather, there is certainly more to come. Please drop me a line and let me know how things are going, I could use some e-company!

seth.edmondson@gmail.com

Seth

Memorial Day

2006-05-28T11:23:00.000-04:00

It’s a beautiful holiday weekend here in State College, and it certainly feels like summer is just around the corner. We are primarily just “taking it easy”, and I’m feeling quite healthy. Sorrel is continuing to do well and fit right in, although he did manage to knock a glass tray of brownies off the kitchen counter and consume all the brownies (it turns out this is not the first time he managed this trick). High gas prices don’t seem to be deterring holiday travel, as AAA reports that an estimated 31.4 million Americans will be traveling this weekend, a slight increase from last year.

Just east of State College is the small town of Boalsburg, home to the Pennsylvania Military Museum, and a town that proudly proclaims itself as the “Birthplace of Memorial Day”. Boalsburg puts on quite a show during this holiday weekend as it pays tribute to America’s fallen war dead. Interestingly, there are about 2 dozen towns across the eastern US that lay claim to originating Memorial Day, which begs the question of how this now popular holiday came to be what it is. As it turns out, Memorial Day’s roots come from the end of the Civil War (in which over 550,000 Union and Confederate soldiers died in combat or from disease), when grieving families began to honor fallen family members at their grave sites. Naturally, these memorial events began to occur in many different towns and cities, both North and South. Memorial Day was officially proclaimed on 5 May 1868 by General John Logan, national commander of the Grand Army of the Republic, and was first observed on 30 May 1868 at Arlington National Cemetery. After WW I, the holiday took on the larger meaning of honoring all fallen American soldiers. In 1966 President Johnson declared Waterloo, NY as the official birthplace of Memorial Day. For a detailed summary of the history of Memorial Day, see here. Regardless of its origins, Memorial Day remains a special time to remember the over 1.7 million Americans who have died from combat and disease during our nation’s existence. I have pleasant memories of the Memorial Day parade and ceremonies in my hometown of Camp Hill, and of playing Taps on my trumpet during the memorial services at the cemetery. We are continuing to see young men and women killed in action, so please take a moment this weekend to remember their collective sacrifice.

Jenny and I are heading down to Philly tomorrow and I’ll be getting my 2nd infusion on Tuesday. I’m hopeful that my side effects will be minimized this time around, I’ll be sure to keep everyone posted on my progress. With any luck I’ll be home by Friday.

Take care, and have a great weekend.

Seth

New Addition

2006-05-23T18:52:00.000-04:00

It’s been awhile since I’ve been able to pass on some good news, so I’m happy to tell you about our new addition, Sorrel, pictured above. Sorrel is a 4 year old Australian Shepherd, and a very welcome addition to the family. He is very friendly and laid back, and listens well. He loves to be brushed, and is quite tolerant and accepting of the kids affection. We feel fortunate to have found such a wonderful dog, and appreciate having something to feel good about.

I am continuing to do well, and am feeling pretty energetic. The doctor has asked that I get blood counts done twice a week, which involves heading to the lab in Altoona, but it’s not a bad trip. Jenny and I have are getting caught up with various household chores and issues that have gotten pushed aside over the last few weeks. I’ll admit (with some hesitation) that Jenny and I will probably watch the American Idol finals tonight, but I was always a Chris Daughtry fan.

Hope everyone is well – I am a bit behind on returning emails and phone calls, but give me some time and I’ll catch up.

Seth

TGIF

2006-05-19T10:34:00.000-04:00

It’s been over a week since my last post, and I’m happy to report that Jenny and I are back home with the kids and things are a little bit more “normal”. It has been a tough couple of weeks, and we appreciate the multitude of support and sympathy expressed for the passing of Jenny’s mother last week. She was laid to rest on Monday, and was remembered by family and friends as a loving and generous wife, mother, grandmother and friend.

As for me, I am feeling better today than I have in about 2 weeks. After my initial bought of nausea, I was extremely fatigued and my esophagus started to act up again. This made eating difficult, which is very frustrating when you are trying to stay healthy. I had to make numerous visits to Fox Chase over the last 2 weeks to support data collection for the trial, but my last blood draw was yesterday. I’ll be returning for my next “round” the day after Memorial Day, which gives me a whole week and half to stay at home, enjoy life, and hopefully feel pretty good. These subsequent cycles of chemotherapy will not require the same level of support for the trial, so it should only take 2 or 3 days of travel, depending on how things go with side effects etc. My most recent C/T scans showed that the 6cm tumor in the pelvis was now 9cm (I expected this since it had been over 2 months since the last scan), a smaller adjacent tumor (1cm), and some bone lesions in the sacrum. The good news is that there were no mets in the lungs, which can create a whole separate host of problems. I will get rescaned after 3 cycles, which is where we will hope to see tumor shrinkage (or at a minimum, tumor stablity).

Chemotherapy drugs work by attacking fast growing cells during cell division. The drugs attack the genes in the nucleus during the division process (different drugs do this in different ways, but the fundamental concept is the same). Most of an adult body’s cells rarely divide, but your body has other frequently dividing cells like hair, skin, blood cells, and digestive tract linings -- these cells are also “attacked” during treatment, causing many of the common treatment side effects. Normal cells typically repair damage more quickly than cancer cells, which is why the overall treatment approach works. Monitoring blood cell counts is a big deal during treatment, including white blood cells (which fight off infection), red blood cells (which carry oxygen to your body’s tissue), and platelets (which are critical in blood clot formation). My white blood cell count was low this week, which forces you to go into “don’t touch me” mode to prevent picking up any stray germs which your body can’t fight off very well. Fortunately, I seem to have avoided getting sick, and my blood counts are back up to normal as of yesterday.

We did get some other very exciting news this week. As you may recall, we added a puppy to our family in January, a female Australian Shepherd named Zuzu. Since my sickness, the breeder, Kelly, has been graciously taking care of her. We are still not prepared to raise and train a puppy, but we have now arranged with Kelly to take ownership of a 4 year old male Aussie named Sorrell who is looking for a good home. Sorrell was trained in obedience and agility by a teenager who has now gone off to college. This might seem a little crazy right now, but we feel strongly about the positive effects of having a well-behaved, medium-sized adult dog around the house. I’ll post some pictures when he arrives this weekend.

Jenny and I will be around through Memorial Day, so feel free to call or arrange a visit (just don’t be offended if I don’t shake your hand!). Our continued thanks for all the support, prayers, cards, emails and phone calls, we appreciate it all.

Take care,
Seth

Some Very Sad News

2006-05-11T10:02:00.000-04:00

It is with a heavy heart that I pass along that Jenny’s mother Helen passed away peacefully at home yesterday after a 2 year battle with ovarian cancer. Fortunately, Jenny and I were able to visit with her mother this last Sunday. Helen was as generous and loving of a person and mother as you could hope to know, and she will be dearly missed by her family. She is survived by her husband Jim, 6 children, 14 grandchildren and a single great-grandchild. Please keep the Imgrund family in your prayers.

I apologize for not keeping the blog up to date, but it has been a tough week. I received my infusions on Monday at Fox Chase, and everything went very smoothly. In addition to the chemo drugs I received several other drugs to combat potential side effects. By Monday night I was feeling pretty fatigued, and by Tuesday I was having some major nausea. The trial requires that I return to the hospital on days 2,3,4,7, and 10 for pharmacokinetic labs (where the measure the level of drugs in your system). I was vomiting pretty regularly Tuesday and Wednesday, so when we went in to the doctor Wednesday, they gave me a couple of hours of saline and some other anti-nausea drugs, including a new prescription for home. Since that time I’ve felt MUCH better, although I am still quite tired. Hopefully the lessons we’re learning from this cycle will help us stay ahead of things next time. I’ve been able to eat some, which is also a big help. I’m heading back in today for more labs, and then will have a few days off. Jenny and I are in the process of making arrangements to cover my medical obligations and get up to Camp Hill for her mother’s funeral (which will probably be on Monday). Right now it all seems like a little too much, but we will continue to take things one day at a time. Thanks for your continued good wishes, prayers, cards and emails.

Seth

Latest News

2006-05-04T09:37:00.000-04:00

It’s been a busy week, and I’m still down in Philly. We spent last weekend here visiting with family and friends, and on Monday Jenny and I went in to Fox Chase. It was a busy day. I met with my oncologist and was happy to hear that everything is lined up for my participation in the ET-743 trial this coming Monday. I had several tests done, and had my port installed. This is relatively straightforward procedure. The port is about the size of quarter and is inserted under the skin about two inches below the collarbone. It has a convex silicon cap that allows for repeated injections, and a catheter that runs into a large vein to the heart. This simplifies the administration of chemotherapy, blood drawing etc. On Wednesday I went back for a complete C/T scan (chest, abdomen, pelvis) and some more tests. Everything looks good, so I don’t expect any last minute issues with my trial.

Jenny and the kids went back to State College on Tuesday with my Dad. My Mom and I are returning later today. Jenny and I will be returning to Philly on Sunday to start my treatments on Monday. We will probably be here most of the week since there are daily tests and checkups for this first cycle. I have very mixed feelings about starting this treatment. I am very glad to finally be starting treatment on the disease, but very apprehensive about how my body will be affected. People have a wide range of reactions to these drugs, and I am hoping that I am able to tolerate the therapy well. Believe it or not, my esophagus is still giving me trouble from the radiation. I am still limited in what I can eat and drink without pain, and I am hoping this clears up before Monday.

The picture above is Joe and Marc getting ready for their Adventure Race "The Savage" this past weekend, raising money for the ACS. They finished the race in a respectable 4 and half hours, way to go guys. You can tell from their glasses that Marc has better fashion sense than Joe.

That’s all for now, I am looking forward to getting back home for a few days. I’ll be sure to keep everyone posted on how things go next week.

Take care,
Seth

Clinical Trial Update, and My Thoughts on the Price of Gas

2006-04-28T10:34:00.000-04:00

I got some very good news today, my oncologist has confirmed that I’ll be able start my trial on May 8th. As of yesterday, it was looking likely that I wouldn’t be able to start till the end of May, but a woman in France did not qualify for the study and I got bumped back up. I went to bed last night thinking I would have to find another treatment option because of the delays associated with this trial, but it all seems to be working out. My esophagus is slowly healing, and I’m starting to be able to eat more and am feeling much better today than earlier in the week. Add to that the discovery of my missing iPod (under my lazyboy for the last week, Jenny found it) and the sky is looking particularly blue today!

Off to another topic that I’m sure is on everyone’s mind… the price of gas. I’ve been spending some time recently trying to understand what goes into the price of a gallon of gasoline, and why it’s so high. I’ve found that the answer just isn’t that simple. Some facts to consider

-- The United States consumes an average of 20 million barrels of oil per day (about 25% of world consumption) according to the Department of Energy. Of that, about 45 percent is used for motor gasoline.

-- The Unites States imports around 10 million barrels of oil per day, about half of which is from OPEC countries.

-- The leading exporter of oil to the US is Canada, followed by Mexico, Saudi Arabia, Venezuela, and Nigeria.

-- The US maintains a Strategic Petroleum Reserve of ~700 million barrels of crude oil in salt caverns in Texas and Louisiana.

-- There are ~ 170,000 retail gas stations in the United States

Other relevant petroleum statistics can be found here

I've broken down the cost of a $3.07 gallon of gas in California (as published at this website). Where does the money go?

1. $1.70 for the Cost of Crude Oil (~55%): Currently, over half of what you pay is for the crude oil from the ground. Current crude oil costs are over $70 per barrel (as high as they have ever been), and each barrel is equivalent to 42 US gallons. So at $70/barrel, the cost per gallon is $1.67 out of the ground.

2. $0.78 for Refinery Costs & Profit (~25%): Refineries process crude oil into a wide variety of petroleum products, including various grades of automotive gasoline. The US currently has approximately 150 operating oil refineries, most of which are in Texas, Louisiana, and California. Refining costs vary for different regions of the US, depending on the formulations required for those regions.

3. $0.58 for Federal & State Taxes (~19%): The current Federal excise tax on gasoline is 18.4 cents per gallon (since 1993). State taxes vary a good bit, and there are often multiple taxes involved, and taxes on taxes. Hawaii, California, and Nevada have the highest taxes, over 30 cents per gallon, and Alaska has the lowest, under 10 cents per gallon. Federal gas taxes are earmarked exclusively for Federal Highways and Mass Transit Projects.

4. Less than $0.10 for Distribution, Dealer Costs & Profit (< 1%): Typical profits for local gas stations are on the order of 1 to 20 cents per gallon, averaging around 10 cents per gallon. This includes all the cost associated with getting the gasoline to the station, marketing, maintenance etc. As of late, the data seems to indicate that local stations are clearing only single digit cents per gallon, often selling gas at breakeven prices, or even at a loss. In years past, this portion was closer to 10-12% in many of the analyses I found.

So why are prices so high? The easy answer is that worldwide Crude Oil prices are at record highs, but why is that the case? As a worldwide commodity, oil prices are determined by worldwide supply and demand, and are particularly sensitive to volatility (or perceived volatility) in the available supply (which is why tension and unrest in and around OPEC countries will drive prices up). Additionally, worldwide the demand for oil continues to increase (in the US and Asia and beyond). Lastly, the United States’ ability to produce refined petroleum is limited by our current infrastructure (we haven’t built a new refinery in 30 years, and have closed many more) – this is another way of saying that we are very dependent on foreign oil. In the end, the price of gas is determined by what US consumers are willing to pay at the pump.

Traditionally, Americans have proven to be quite insensitive to changes in gas prices, with only minor decreases in gas usage during periods of high gas prices. The reality is that, unlike many other consumer goods, we have no alternative to buying gas for the cars we currently own. Most of us drive just about everywhere we go and to do that we have little choice but to buy gasoline. In the meantime, the standard list of things you can do to reduce gas consumption should be considered (check your tire pressure, combine or eliminate trips in the car, carpool etc). A good list from AAA can be found here…

Most of the proposals coming out of the government in the last week to “do something about it” fail to address any of the supply/demand issues affecting the price of gas, and appear to be nothing more than election year ploys. One particularly sad example are the Bee County, Texas Commissioners who voted this week to have all citizens boycott the 3 Exxon stations in town, until prices drop to $1.30 per gallon (keep in mind that at current world market prices, crude oil costs close to $1.70 per gallon before its refined, shipped, taxed etc). These types of approaches are just downright foolish. I’ve seen several similar boycott strategies promoted in email chains, all of which are similarly flawed and wont work. See snopes.com for a good explanation of why this is so.

In any case, we’ll be spending lots of money driving down to Philly Saturday morning, and I’ll be in at Fox Chase on Monday and Wednesday getting lots of pre-trial tests done (C/T, blood, EKG, MUGA, port installation). It will feel very good to be moving on with my treatment (and not having to fill my days researching the economics of gas prices).

Take care and be well,
Seth

The Radiation Blues

2006-04-25T20:24:00.000-04:00

Well, any illusions I had about being Superman have been dispelled. Despite not initially feeling any effects from the radiation treatment, over the last several days my esophagus has become increasingly sensitive and painful, and over the last 24 hours I’ve had difficulty swallowing. This is a common side effect, I just didn’t expect it to take this long to manifest. I’m also feeling quite tired and achy. The good news is that it is only temporary and should clear up later in the week. At least I know that the radiation did it’s job.

The kids have been surprisingly receptive to “Turn off the TV Week” and we’ve been finding other fun things to do. Jack and Spencer are both playing soccer which meets twice a week, and yesterday we took the kids to a local military museum where they were able to climb all over tanks and other fun stuff. I’ve gotten lots of good books, and book recommendations, from many of you, and I’m trying to keep up.

The picture above is from a recent “Coaches for Cancer” 5k run in State College. Several SRI employees and their family members participated and raised funds for the American Cancer Society. A big kudos to all those who participated. This coming weekend, two co-workers and friends, Marc and Joe, will be competing in the Savage Adventure Race down in Philly -- 5 miles running and orienteering, 10 miles mountain biking, and 5 miles canoeing. They have raised money with matching funds from SRI, all for the ACS as well. Good luck to both of you, and thanks for supporting a worthy cause.

Seth

Monday Update

2006-04-24T08:15:00.002-04:00

No real medical news to report this week. I am still waiting to head into FCCC on the 1st for a port installation and some other tests. The trial is supposed to start on the 8th – I spoke to the trial coordinator this week and she tells me there is a chance this could be delayed, which I’m hoping is not the case.

We’ve had some outstanding spring weather as of late, which has helped keep things cheery around here. This week is National Turn Off the TV Week, which Jenny and I decided our family would participate in. We had the kids make a list of things they would like to do instead, so we’ll see how it goes. Jack lost his first tooth yesterday, so the tooth fairy paid him a visit last night.

For those of you concerned about gas prices this summer, I found a good site that depicts prices by county across the US on an interactive map. See the GasBuddy Website. This site also lets you find prices at individual stations in your area, which may save you some money.

I also wanted to mention an excellent Cancer resource. The National Comprehensive Cancer Network (NCCN) is an alliance of cancer centers and professionals that develops comprehensive guidelines for cancer care. The guidelines are called the “NCCN Clinical Practice Guidelines in Oncology” and define the recognized standard for cancer care for almost all types of cancer. There are separate guidelines for the various types and places of cancer – they generally take the form of decision trees that guide the doctor in determining the course of treatment. If you or someone you know is diagnosed with cancer, this a great place to start to begin to understand what your treatment options are, and start understanding the terminology and issues involved with cancer treatment. They are reviewed and updated yearly. You can download specific guidelines as pdf files at this site.

Also, a very big THANKS to all those families that continue to bring us meals at regular intervals. This is a huge help for our family and we are very appreciative of all those who are lending a hand.

We will be heading to my parents this Saturday to spend some time there before my appointment. We’re still not sure when we’ll be coming back. That’s all for now, please feel free to drop me a line at sethjenny@adelphia.net or seth.edmondson@gmail.com as I am not watching TV this week and have plenty of free time!

Seth

Fox Chase Update

2006-04-18T11:37:00.000-04:00

We had a successful visit with Dr von Mehren at Fox Chase Cancer Center yesterday, and have returned back to State College. Dr von Mehren sees sarcoma patients almost exclusively, and is one of the prominent researchers in soft tissue sarcoma. We discussed several options with her, but at this point it appears likely that I will participate in a clinical trial using an investigational drug called Yondelis or ET-743. This will involve chemotherapy at 3 week intervals administered at Fox Chase, along with period imaging studies and blood count monitoring etc. We have confirmed with the Sloan doctors that they now think the cancer is a Malignant Peripheral Nerve Sheath Tumor (MPNST), which is traditionally less chemo-responsive than LMS, so a clinical trial with a new drug makes a lot of sense at this point.

This trial is a Phase 1 trial (Phase I trials generally examine the safety of various dosage levels of a drug, not the efficacy of the drug itself) that combines Doxorubicin with the investigational drug Yondelis. Yondelis has been studied widely in recent years as a stand alone chemotherapy agent, and shown that it can be quite effective against certain types of soft tissue sarcoma (and other types of cancer as well). In this study, they are adding in a standard chemo drug (the Doxorubicin, also called Adriomycin) to study what doses are tolerable. Results to date have shown the combination to be well-tolerated, so I don’t have any big concerns.

Yondelis (also called ET-743) is an interesting drug in that has been extracted from a marine organism called the Mangrove Sea Squirt (Ecteinascidia turbinate). It was developed by a Spanish company called PharmaMar in conjuction with Johnson & Johnson. The derived drug is a tetrahydroisoquinolone alkaloid, and works by binding to DNA and disrupting its ability to replicate and forcing the cell to die. Dr von Mehren has written a good article on the subject here. You can quickly get lost in the details, but the bottom line is that this drug attacks cancer cells in a novel way and has been shown to be effective against sarcoma and other cancers where there are not a lot of other good options. We have corresponded with quite a few folks who are taking Yondelis, and I feel very positive about this treatment option.

I will be returning to FCCC in two weeks (May 1st) for updated imaging studies of my tumor, blood tests, and to get a port installed. I should start the infusions around May 8th and get them every 3 weeks. The first cycle will require lots of visits, but after that it should only require 1 day every 3 weeks. The number of cycles will depend on my response, side effects, and the overall dose of doxorubicin, but it will probably run through most of the summer. Overall, we really liked Fox Chase and the nurses and doctors there – it was much smaller and less hectic than Sloan. Now it’s just a matter of waiting a couple of weeks to get things started. Jenny and I are hopeful that this treatment will shrink the pelvic tumor sufficiently so that it can be removed surgically, along with any other remaining disease.

Take care everyone,

Seth

Friday Night Update

2006-04-14T20:36:00.000-04:00

It’s Friday night and I am anxious to get down to Fox Chase for my next appointment. I am meeting with Dr von Mehren this coming Monday morning (the 17th) to discuss my chemotherapy options. Jenny and I have been busy getting our records together for the visit, and trying to get all the necessary pathology slides and reports in our hands. We were reviewing the just-completed pathology report from Sloan today and noticed that after review of all available tissue, the pathologist’s preferred diagnosis was “malignant peripheral nerve sheath tumor” (another sub-type of soft tissue sarcoma), not leiomyosarcoma. Unfortunately, there seems to be less data available on-line regarding MPNST that on LMS, but I have learned that differentiating between the two can be difficult. My impression is that pathology can be a little bit science and a little bit fortune telling. Regardless, the “standard of care” treatment for either is the same, and I don’t expect the overall treatment regimen to vary. We did find a clinical trial at Fox Chase for MPNST that we will be asking about, in addition the main-line AIM treatment. I must admit to being frustrated with having to fight such a mysterious enemy, but I will fight the enemy just the same.

We will be heading down to my parents on Sunday after celebrating Easter here. I expect the Easter bunny will visit both places, though. It has been a busy week overall. We were very happy to see my Grandparents and Aunt Claudia and Margaret for a short visit on Thursday--they stopped by on their way back to Ohio. I also managed to get out for lunch with some co-workers and catch up on all the exciting things I am missing at work. The big news is that I have a new Lazy-boy recliner which is quite heavenly. It doesn’t have a beer fridge or anything that fancy, but it would be hard to beat for my afternoon nap. My sincere gratitude goes out to “you know who”, thanks a million. The included picture shows Nathan trying out the chair in his preferred mode of dress.

Take care, and a Happy Easter and Passover to all.

Seth

Radiation Treatment Complete

2006-04-10T20:47:00.000-04:00

Well I'm happy to report that we successfully completed my IMRT radiation treatment today. Things went well and I am now in New Jersey at Tom & JoAnne's place. We left State College this morning around 7:30 and made it into NYC around noon. Jenny did a commendable job driving in Manhattan for this first time, and we managed to avoid rush hour on both the way in and way out.

The treatment itself took about almost 2 hours. We had a 3:30 appointment and we were called back around 4pm. In the afternoon, we coordinated with the pathology dept to have my slides and reports sent out for my appointment at Fox Chase. We had a small lunch and spent the afternoon reading before I was called back. The treatment itself was not painful except that you are immobilized on a hard platform for an extended period. My body got stiff and sore, but it was tolerable. It took about an hour to get my position "just right"; they would scan and then make small adjustments. The radiation then took another 30+ minutes. It was painless, but you could hear the loud whine of the x-ray transmitter. They did 18 doses, each about 45 seconds, from about eight different positions. The angles of the positions are determined via a sophisticated algorithm, and targeted the T4 and T5 vertebrae while avoid the spinal column and other vital organs. I am expecting some pain and discomfort to develop, but have not really felt any side effects yet.

Jenny and I were able to see Lara for a little while, who had just picked up her wedding dress. She is getting married in July, and Jenny and I are hoping to be able to make the trip to Las Vegas to attend. I don't know how I'll be feeling then, but we'll just wait and see. I already cancelled a trip to Las Vegas with my college friends at the end of April, but I have no doubt they'll have a blast without me :}

Jenny and I will be heading home tomorrow mid morning, and get back to our suburban recovery mode. We are still researching and communicating with other LMS patients about new drugs, treatments, and many other details.

Our continued thanks for all the prayers and support, we are very grateful. I'll keep everyone posted on how I'm feeling this week, and how things go at Fox Chase. I am feeling very relieved to have the radiation treatment behind me, and anxious to get to the next phase.

All the best to everyone,
Seth

What Comes Next

2006-04-06T13:48:00.000-04:00

Things have been relatively quiet this week, and Jenny and I have been busy researching on all sorts of medical topics. Fortunately for me, my company kindly supplied me with a new laptop and wireless which has allowed me to surf away from the comfort of my lazy boy chair. What a life – internet access, cable TV and a lazy boy! Many thanks to Marc, Doug and Ryan for getting me hooked up.

We’ve made some progress in determining a course of action for chemotherapy. The protocol we will likely pursue is called AIM, which stands for Adriamycin, Ifosfamide, and Mesna, the 3 drugs that make up the protocol. Adriamycin is also commonly called Doxorubicin. Because the AIM protocol involves infusions over 3 days every 3 weeks, we have decided to look into getting treatment at Fox Chase Cancer Center in Philadelphia, near my parents. This would be much easier (logistically, anyway) than getting the treatment in NYC. Fox Chase has a sarcoma team, and Dr D’Adamo had recommended an oncologist there named Dr von Mehren. I am still waiting to hear about an appointment there, but I’m hoping to see her the week of April 17th. Fox Chase also routinely participates in Clinical Trials for sarcoma, so we should have other options available to us as time goes by.

I am still on the schedule for my radiation treatment this coming Monday. Jenny and I will be leaving early Monday am and plan on staying in Bayonne on Monday night. We’ll head home Tuesday and I am hoping the short term side effects are not too painful.

One of my favorite authors in recent years has been Stephen Jay Gould, a prolific author of essays on natural history. I enjoy his choice of subjects and his clear, logical style of writing. I didn’t know it until this week, but Gould was a 20-year cancer survivor until his death in 2002 at the age of 60. I stumbled across a short essay of his about statistics and cancer survival that I found very comforting. It reaffirmed for me the importance of a positive attitude and the dangers of getting caught up in survival statistics. You can read his essay here.

Jenny and I appreciate everyone’s continued support. The kids are doing well, and I’ll try to get some more pictures posted.

April 1st Update

2006-04-01T19:45:00.000-05:00

Jenny and I returned from NYC this afternoon and had a successful trip. Thanks to my Uncle Alan for driving us in and out of the city, and a big thanks to Lara for a cozy place to call home while we were there.

Thursday was a very long day with 3 appts in 3 different locations in the city. We first met with Dr D'Adamo, the medical oncologist. We discussed 4 different options (different drug combinations, some of them experimental) for systemic chemotherapy but didn't make any decisions. All of them have pros and cons, and none of them are effective for all patients with LMS (leiomyosarcoma). Jenny and I will be doing some extensive research on these options, and contacting other folks via an LMS listserve to find out their experiences with these protocols. There are way to many variables involved to make the decision an easy one, and, in reality, I don't think there is a "right" decision. Many patients with LMS will try several different protocols before finding something that works, so we'll have to just wait and see.

We met with my surgeon, and things are in good shape with my spine. The x-ray looked good and I am continuing to gain stamina and strength. Neurologically, the doctors are very pleased with my condition, so the surgery really went well.

Lastly, we met with the radiation oncologist, and learned the details of my radiation treatment. I will be getting a single radiation treatment on the T4 and T5 vertebrae on April 10th. It will be the equivalent of 11 weeks of normal radiation treatment in a single dose - sarcoma tends to be more sensitive to larger doses vs multiple smaller doses.

Friday we returned to the hospital for my myelogram and IMRT simulation. I had 10 cc's of dye injected into my spinal column and then had body molds made for my torso and head. You are immobilized on a table with the body molds and a C/T scan is taken so that they can determine precisely where the X-ray beams will be aimed and focused etc. Sloan has pioneered this precise radiation treatment for cases just like mine where radiation needs to be administered in sensitive areas like the spine. I then had 4 small tattoos put on my chest to provide calibration points for when I return for the actual treatment. The whole day took about 9 hours, but I was laying down for almost all of it. There are some short term side effects from the treatment (skin burns, sore throat) but I should be able to move on the next phase of treatment after a week or two.

All in all, it was a very tiring two days, and we returned back to State College today. We'll be returning to NYC next Sunday, but haven't worked out travel plans just yet.

Once Jenny and I get some more details on what chemotherapy treatment we will be pursuing I'll share some more details.

Our continued thanks for all the calls, cards, visits, emails and prayers, we sincerely appreciate all the support we are receiving from everyone.

Seth

What is Sarcoma?

2006-03-28T11:21:00.000-05:00

Having read quite a bit about it as of late, I wanted to share some general information on Sarcoma.

Cancer, in general, is the abnormal growth of cells in the body. Each cell in our bodies has 23 pairs of chromosomes. Mutations during cell division (caused by genetics or external damage or factors) can result in abnormal chromosomes that cause rapid cell division and tumor growth. These cells quit obeying the normal rules and keep dividing in an uncontrolled manner. The specific type of cancer is a direct function of the type of cell that went haywire. Carcinoma (tissues that line internal organs & passageways), Sarcoma (soft tissue & bone), and Lymphomas/Leukemias (lymph glands and bone marrow) are general categories of cancer. The American Cancer Society estimates that 1 in 2 men and 1 in 3 women will be diagnosed with some type of cancer in the lifetime (pretty scary). Men are most likely to suffer from Prostate (1 in 6) or Lung (1 in 13) cancer, and women are most likely to suffer from Breast (1 in 7) or Lung (1 in 18) cancer.

Sarcoma accounts for less than 1% of all cancer, with ~ 10,000 new diagnoses each year in the US. At any one time about 50,000 people are dealing with Sarcoma. Because it is a rarer form of cancer, it is advised that you seek treatment at a cancer center that specializes in sarcoma, such as Sloan Kettering or about a dozen others. There are over 50 types of sarcoma identified -- soft tissue sarcoma can occur in the muscles, fat, blood vessels, tendons, fibrous tissues and synovial tissues (tissues around joints). In my particular case, my original diagnosis was leiomyosarcoma ("lay"-"oh"-"my"-"oh"-"sarcoma"), which means the cancer developed in smooth muscle tissue (in my abdominal muscle). The cancer can spread through the blood stream and metastisize in other parts of the body (as in my case, in the vertebrae). In general sarcoma is very aggressive and has a very high recurrence rate. I've joined a leiomyosarcoma listserve and it is clear that many patients deal with recurrence and multiple tumors and metastatic sites. The good news is that many of these patients have found successful treatment options by working with sarcoma specialists, and many have achieved a "No Evidence of Disease" or NED condition. This is the goal of any motivated sarcoma patient! Surgery, radiotherapy, and chemotherapy are often used in parallel (as they will in my case), and there are many clinical trials underway testing experimental drugs. I'm hoping to be able to enroll in a specific clinical trial at Sloan.

There are several good sites that deal with sarcoma:

Sarcoma Alliance
National Leiomyosarcoma Foundation
Leiomyosarcoma Info
Leiomyosarcoma.net

Probably more than anyone wanted to know, but not bad for someone whose last biology class was in 9th grade.

Jenny and I are headed to NYC tomorrow morning, my parents will be in town taking care of the kids. We can be reached via our cell phone and will be back Saturday. I got my Masters degree at George Mason when we lived in DC, so I'm looking forward to Saturday's Final 4 game. Go Patriots!

Twin Testing

2006-03-25T07:22:00.000-05:00

My brother and I received the results from our genetic testing yesterday. It probably doesn't come as a surprise that we are genetically identical. The following is an excerpt from the report....

DNA samples were analyzed using a technique called PCR. Next, we
analyzed 7-8 standard DNA markers (D5S818, D13S317, D7S820, D16S539, vWA,
TH01, TPOX, and CSF1PO) and determined that the highly variable DNA markers
were the same for both twins. Thus, there is greater than a 99% probability
that the twins are monozygotic.

Rob and I feel a sense of closure with this, primarily because our experiences growing up were those of identical twins. It turns out that about 20-30% of identical twins will form separate placentas early on, leading a doctor to mistakenly believe that newly born twins are fraternal.

Friday Update

2006-03-24T06:13:00.000-05:00

I've now been home a week and am feeling well. My legs have improved a good bit in the last 48 hours and I am now just using a cane to move around the house. I can get up and down the stairs fine. After 10 minutes or so on my feet, my back and neck start to complain, so that is my biggest constraint to complete mobility right now.

Jenny and I will be heading to NYC on Wednesday the 29th and stay at her good friend Lara's appt in uptown. We have 3 appointments on Thursday (Surgeon, Oncologist, Radiation Oncologist). We have lots of questions and things to discuss with all 3, so I should have lots of answers by the time we return. On Friday, I am having a Myelogram done at MSKCC as well. This is in preparation for my radiation treatment. Along with the myelogram, they will be creating a full body mold of my body and doing a C/T scan. All of this feeds a complex computer model/simulation to conduct the IMRT (Intensity Modulated radiation Treatment). This is currently scheduled as a single high dose treatment on April 10th. IMO, this is pretty cool stuff. The whole idea is to be able to precisely aim high energy X-Rays at the cancer site, killing off any remaining cells from the surgery, all while minimizing damage to healthy tissue.

Friday will be a long day, so we expect to leave NYC on Saturday morning.

A special thanks to Jenny's brother Mark (or as Nathan calls him "Uncle Shark" :)) who spent the week here. You were a huge help! My sister Sarah is currently visiting, and Jenny's sister Ann is headed up for the weekend.

Another topic....... Jenny and I lost our dog Blue this past year, and after much searching in January, we brought home a female Australian Shepard puppy named Zuzu. When I was admitted to the hospital, the breeder, Kelly, (she lives down in the Harrisburg area) was quick to volunteer to puppy sit for the long term while we dealt with my medical issues. Kelly shows dogs, and last weekend she took Zuzu to a dog show down in Virginia. We were quite surprised to learn that our own Zuzu brought home 3 awards, one best of breed puppy award and 2 best opposite sex puppy awards. Apparently, she has whatever the judges are looking for! Once things settle down, we'll be taking Zuzu back, but right now she is in excellent hands and doing great.

Hope everyone has a great weekend!

Seth

Family Photo

2006-03-21T11:26:00.000-05:00

Click here to see a picture from this weekend....

Latest Schedule

2006-03-21T11:03:00.000-05:00

It looks like Jenny and I will be heading to NYC next week for a few days (29th-31st) to meet w/ several doctors. First, I'll be meeting with a Radiation Oncologist, Dr Yamada, to discuss the radiation treatment on my spine. The plan is to use a single high energy treamtment on the effected verterbrae. With proper modeling, they have the ability to steer the X-rays within 2mm of your spinal cord, giving max lethality to the cancer cells and minimizing collateral damage to healthy tissue. The actual radiation treatment will probably occur the first week of April.

Second, we'll be meeting with an Oncologist, Dr D'Adamo, to discuss my chemotherapy options. Because of the remaining disease in my body, a systemic treatment is going to be required. Sloan has several clinical trials going on, and Jenny and I are researching as much as we can to determine what "new" therapies might work best. Because Sarcoma is rare, many of these approaches are largely experimental. We've also spoken to my original Oncologist in Washington DC to see what approaches he might recommend.

I'm now off the major pain killers and I've had to slow down a little bit. My back is quite tender and keeps telling me to stay, while my legs are feeling antzy to walk around a get stronger. Jenny's brother Mark is in town helping with the kids, so things are peaceful around the house.

I read a book called "Freakonomics" yesterday which was quite good and seemed to keep my mind occupied on other things. Any good book recommendations are welcome!

Seth

Special Thanks

2006-03-19T10:25:00.000-05:00

It's Sunday morning, and I have another good night of sleep behind me, it feels good. My legs are still weak, and my balance isn't all there yet, but I am getting around pretty well.

Some many of you have helped in many ways, but there are a couple of thank yous I wanted to send out today.

First, to my brother Rob, whose presence in NYC was invaluable, and who got me back to PA. THANK YOU, I'm proud to have you as a brother. For those that don't know, Rob is my twin and lives in California with his own family, so we don't get to see each other as often as we would like. Rob has been training hard for this upcoming cycling season and I 'm hoping he can get back on track quickly. Rob and I are awaiting some genetic testing results to determine our zygosity, since we've always wondered "Fraternal or Identical?". We should hear soon.

Secondly, to all my Cornell Rockledge brothers who crawled out of the NYC woodwork to help me out before I even got there. Your advice, time, calls, visits etc were very much appreciated, it felt good to be back in your company. A special thanks to Kurt and Jim for your continued medical guidance and support, I can' thank you enough.

Thirdly, to my guardian angels, Tom and JoAnne of Bayonne, NJ. Your dial-a-mattress, your Cadillac, and the Judickee's donuts were all integral parts of my "escape from New York", and I can't say how much it meant to our family.

Another thank you to the community of State College, PA. My parents were simply overwhelmed by the amount of genuine support shown by the entire community here, and Jenny and I can't believe how lucky we are to have ended up in such a caring community.

Lastly, to my wife and parents, you already know how I feel......

OK, enough for now.

Jenny and I should have some more schedule details on my upcoming treatment early this week, we'll share as it becomes available.

Until then, visits and phone calls are very welcome.

Seth

Spinal MRI

2006-03-17T21:37:00.000-05:00

I am including two photos from my March 3rd MRI on my spine. The first photo on the left above shows a normal vertebrae and spinal cord somewhere below the tumor. My back is at the bottom of the photopgraph.

The next photo gives some indication of the pressure that the tumor put on the cord, and explains why I was starting to have the symptoms in my feet, legs, and torso. This photo is from the T4 vert, about chest level. You can see the deformed, darker tissue that was part of the tumor both around the cord and in the bone itself. My complete sensation has not yet returned to my legs and feet, but my strength is there, so I am feeling quite confident about having fully functional legs at this point.

My Background

2006-03-17T15:55:00.000-05:00

I 've set up this blog to be able efficiently share current info on my medical condition and let everyone know how things are going. I'm hoping it will help us keep everyone informed, so please let me know what you think.

It's been a crazy couple of weeks. For those that don't know, I was diagnosed with soft tissue Sarcoma in March 2004 when we lived in Wash DC. We found great care at the Washington Hospital Center, specifically at their Cancer Institute, with Dr Steves (surgeon) and Dr Priebat (oncologist). Dr Steves removed a 4.5cm tumor from my left abdominal wall and replaced my muscle with an index card sized piece of mesh. Given the aggressive nature of Sarcoma, a successful initial resection is a great way to start treatment. I was closely followed over the last 2 years, and we had since moved up to State College. I had been seeing an oncologist every 3 months at Hershey with no indication of recurrence. For abdominal sarcoma, recurrence locally or in the lungs is what would be typical.

In my case, since about Christmas, I had been chest and back pain, and not feeling well. I was convinced I had an ulcer, and finally ended up having a pelvic C/T which revealed a 5cm mass in my right pelvis. I had also started having numbness in my legs, shins, and finally torso. We checked in the Hershey Hospital on 3/3/06, and a full spinal MRI showed additional tumor in the T4 vertebrae (this was pretty scary news at the time). The drs were recommending immediate surgery to get the pressure off the spinal cord. Long story short, we knew from past experience that we had to get a Sarcoma center where surgeons specialize in this sort of stuff. We quickly found that Dr Boland and Dr Bilski were published in spinal sarcoma surgery, and Memorial Sloan Kettering is on of the leading sarcoma centers. I called an old friend, now an orthopedic dr in the NY area, and he was able to accommodate a next day appt with Dr Boland, who was one heck of a nice guy and very reassuring. We checked in to Sloan on Wednesday the 8th and had surgery scheduled for the 10th. There were lots of tests, scans etc to get ready, and by early afternoon on Friday they were wheeling me into the OR. The first 2 days of recovery were very tough, I could hardly move, and my whole spine felt like a had a very solid metal yardstick attached to it. It turns out that the tumor was in both T4 and T5, and they ended up operating from T2 to T7 to get everything stabilized. I am still waiting to the X-Ray of the hardware they put in there -- screws, rods etc. The good news is that I have been recovering fast and my neck and spine seem to be adjusting to the new arrangement. The tumor was in both the vertebral body and the epidural space, so the T4 and T5 have definitely been altered in shape and content. The surgeons were quite clear that I "really needed this surgery" and that "things were very tight in there". Quite honestly I don't know if they were expecting me to be able to move me legs again, but they did one heck of a job. By Monday the 13th I was able to get out of bed almost on my own, and by late Tuesday I was chomping at the bit the get checked out and get home to recover. We finally got out of there by Wednesday night. My kudos and thanks to all the staff on the Neurosurgery floor at Sloan, they were all terrific and very supportive of my recovery.

The next big steps here are
1. Following up on my spinal surgery
2. Getting radiation treatment on the spine and
3. Getting a chemotherapy protocol established the address the remaining disease in my pelvis. There are lots of options here on how this will be addressed, so these are topics I will reserve for another post.

Jenny and I will be heading back to NYC next Wednesday to start dealing with all of this , right now we are happy to back in our own bed and to be able to see and hug the kids.

As I get them, I intend to post some C/T and MRI imagery of some of the more interesting aspects of my case.

Also, I hope to be able to share some more information on sarcoma and related topics as we continue to learn about it.

Much love,
Seth

PS my apologies for spelling and grammar, I am still on Percocet among other strange drugs...

Initial post

2006-03-16T21:44:00.000-05:00

Well I am happy to report that Jenny and I have arrived home this afternoon, (Thursday) from Memorial Sloan Kettering Hospital in NY.

I am recovering well from my spinal surgery. All of you have been a bedrock of support our family over the last 2 weeks, and Jenny and I send our most sincere thanks and appreciation for all support offered and lent. For those of you who are hearing about this for the first time, we apologize that it has been difficult to get information out easily to our friends. We literally have not been home since the morning of March 3, when we received a phone call from my oncologist at Hershey.

A brief summary: I was re-diagnosed with a pelvic tumor on 3/3/06, another sarcoma. (an original tumor was removed 2 years ago and things had been going well until recently). The drs also discovered a tumor in the spine which required near immediate removal. Jenny and I traveled to NY because of their spinal sarcoma surgical expertise at Sloan Memorial. Surgery was on 3/10 and IÂm home 6 days later. I will be following up with radiation and chemo in the months to come based on the current state of the disease, but we have found the leading sarcoma doctors around and are in very good hands.
This is a web blog where Jenny and I can disseminate info much more efficiently that we are now. We just havenÂt been able to respond to every phone call and email, but appreciate them just the same. And we are especially thankful for all the prayers coming our way! Look for updates in the next day or 2.

Take care, Seth and Jenny