[updated as of 1/3/09]

So many people have been asking my family and me "How did this happen?", "When did this all begin?" "How did you discover it?" etc.   Although posting my story on a website is not my first choice of communication for a personal issue such as this, I wanted to make sure that I responded to so many people's requests for a "background" of the discovery of my sarcoma and my treatment and diagnosis to date.

In November, 2004, I noticed that I began to get an increasing number of stomach aches. I also noticed that I looked and always "bloated".  During my annual gynecological exam, my Dr. ordered an ultrasound which revealed that I had a fibroid tumor; a very common condition that affects a majority of women (it later turned out that what the radiologist believed was a fibroid tumor was, in fact, my sarcoma.  Although I have been told over and over again that sarcoma is so rare that "if you're not looking for it, you won't find it", I  have since switched Dr's. to make myself feel more assured).

The symptoms continued and in mid-December I noticed that I had a constant low-grade fever that would "spike" once or twice a week to about 101-102 degrees. I would also experience consistent night sweats and a pretty steady loss of appetite.  After a few visits to my general practitioner, she agreed that it seemed like more than the flu and proceeded to do a number of blood tests.  These blood tests confirmed that I indeed had an infection "somewhere" in my body.

After a week of more ultrasounds, CT scans and MRI's, I was ordered to undergo surgery to remove a large tumor (about 15cm) in my abdomen.  I had surgery at Mt. Sinai on December 30th.  In order to remove as much of the cancer as possible, the surgeon also removed part of my colon, my appendix, and other tissue in the area.  The surgeon did an excellent job and removed all of the visible cancer from me. I was a great patient (if I say so myself!)  and made a very fast recovery from the surgery. I was back running on the treadmill in less than three weeks!

We all hoped that the surgery was the worst of it, but unfortunately, the post-surgery diagnosis was very concerning.  After analyzing my tissue under a microscope, the doctors told my family that I had a very high risk case of sarcoma.  They said that I still had microscopic cancer cells in me, and that cancerous growths are very likely to occur again in the near future (80% of sarcoma patients have a recurrence within three years).

Knowing that I needed the best possible care, we obtained a number of opinions from various doctors.  After doing so, we made our decision to work with Dr. Maki/Dr. Singer at Memorial Sloan Kettering.  Dr. Maki is one of the leading sarcoma experts in the world and Dr. Singer is the leading Sarcoma surgeon in the world.   We are so fortunate to live in NY in that Memorial Sloan Kettering is one of the best cancer hospitals and one of only a handful of hospitals in the US with a Sarcoma Center designed specifically to focus on this type of cancer.

Dr. Maki and his team recommended that rather than perform follow-up treatment such as chemotherapy and radiation, it made most sense to closely monitor me with quarterly CT scans to see if and where the cancer comes back.  The short answer for why they did not recommend chemotherapy at the time was that since all of the visible cancer was removed from me, they would have no way of truly gauging the progress of the chemotherapy. .. and why put someone through something as strenuous as chemotherapy if it would be difficult to measure its success.

The next 7 months were a strange combination of "normal" and "anything but normal".  My family and I did a great job of living life to its fullest and trying to forget the "looming" CT scanes every three months.

The good news was that I was feeling GREAT!  I joked around with the Dr's, that with the exception of the diagnosis; the surgery was the best thing to happen to me.  I was living with so many low-grade symptoms that I didn't realize could be erased when the tumor was gone.  My stomach aches completely went away, my digestion got a lot better and I even stopped snoring (Dave was very happy about that)!  Over the course of my 34 years to date, I would say that the months of February – August were the best in terms of my physical abilities (I was fit and looking good!)

I was so confident that the cancer was not back that I scheduled a "day of Jen" for my August 2nd CT scan.  I would get the CT scan in the morning and then have a day of lunch with friends, massages, shopping etc…a day to celebrate my health.

Unfortunately, August 2nd became a day in the Dr's office because the CT scan (and subsequent ultrasound) revealed that I had a smaller (5cm) tumor in the same area as the original one.  The good news (I love how Dr's find good news in anything) was that it was a local recurrence, meaning the cancer came back in a place that was operable.

After meeting with Dr. Maki and Dr. Singer who were disappointed, but not surprised, they recommended that chemotherapy was indeed their choice of treatment before surgery to remove the tumor.  Their rationale was that because they could now "see" something in my abdomen, they would be able to closely monitor how the tumor "reacts" to chemotherapy.  I wound up having 6 months of chemotherapy (each cycle consists of 3 days in the hospital and 2.5 weeks "recovering"). After 6 months of chemo, I had another surgical resection and I was declared cancer free in February, 2005.  My Dr's were relieved but were cautious - "you need to get through the next 3-5 years until you're out of the forest" they said. ? Well, I made it 14 months cancer-free.  3 weeks after hosting a fundraiser for sarcoma research that raised $215,000 for MSKCC Sarcoma Research, I relapsed.

I began another chemo regimen in March 2007 that lasted for 16 months and was completed in June 2008.  I also had another surgery during this 16 month period.  The good news is that the regimen worked and I was set free again in July, 2008.  Again, with the understanding that I needed to get through 5 years to be in the clear.  At this point, Spin4Survival had experienced another great year and we had now raised a total of $850,000 for rare cancer research.

Unfortunately, I found out in December, 2008 that my cancer is back for the 4th time.  I made it through 6 months this time before a bad stomach bug brought me to the hospital and we found out, quite unexpectedly, that another tumor was found in the same general area of my abdomen.

I started chemotherapy on 1/2/09 and surgery and potentially radiation may happen in the future.   Cycle for Survival (trademark issues made us evolve the name from Spin4Survival) continues to grow and flourish.  Dave and I are so proud of the "baby" we have created.  We are now official partnering with Memorial Sloan-Kettering Cancer Center and Equinox Fitness Clubs and the event is hoping to raise over $1MM this coming 1/25/09.

I am grateful for every day I am alive.  I am extremely fortunate that the chemo has very minor side effects for me. I work every day, go to the gym and see friends and family often.  With the exception of having to put off having a family for the indefinite future, cancer has not forced me to change my life.  In fact, the irony is that it has been one of the best things that has ever happened to me.  For this I am extremely grateful.