July 15, 2007
My Sarcoma Journey - Chapter Three
In Memorium - September 15, 2008 d.
When I started My Sarcoma Journey nineteen years ago I never dreamed where this health adventure would take me. Along the way I have met some incredible people. Some are sarcoma patients like me. Others are families of patients and still others are those committed to help find better treatments and better resources for us to get those treatments. The years since my last story have been quite a learning experience as I have delved further into advocacy and learned even more about what I need to be doing to help others with sarcomas.
- My Sarcoma Journey- Or I Have What - Is chapter one and located at
- Sarcoma for Life is chapter two and located at
I last wrote about My Sarcoma Journey four years ago and at that time had undergone 5 surgeries for liposarcoma. An update is certainly due. Since then I have had two more very big surgeries and very difficult recovery time during the 6th. I developed some very serious problems after that surgery. To mention a couple, I had a very large, abscess which required a month of draining plus a fistula that required a month of TPN. We had to stay in Houston and close to MD Anderson to do this. Thankfully my husband made an excellent nurse and we were able to stay in an apartment and not be in hospital the whole time. We managed to get it done. It wasn't easy with the added problem of Hurricane Rita bearing down on Houston. We were there for Katrina and watched all that occurred during that event and hoped and prayed that Houston would be spared when Rita arrived. Thankfully we stayed with friends and Rita caused only marginal damage to Houston.
We headed for home but only 6 weeks later we were back in Houston on an emergency basis. I had a very serious infection and needed to be at MDACC and under the care of my sarcoma doctor. It turned out I had MRSA and wow was it ever difficult to treat. I was in and out of hospital several times before we found an antibiotic combo that would work and could be administered in the apartment by IV. Again my husband did nurse duty and we did a month of IV antibiotics along with a wound vac on my stubborn incision for the infection. The care I received from the doctors, nurses, outpatient care, home health care, pharmacy was all phenomenal!!
However after that surgery in August 2005, I didn't have long to wait for the next big one to hit. This time my tumors turned aggressive and I needed a quickly scheduled surgery while it was still possible. On November 2006 I was back in MD Anderson Cancer Center for the next surgery. It went well with just a few minor complications so we were in Houston for about 6 weeks. After getting home I did have a fungal infection and that was scary. I had visions of returning to Houston and repeating what happened in 2005. So far I am doing fine with some progression of disease as of July 2007.
There have been two other big occurrences in my life this year. First, I was selected to receive the Leadership in Courage Award from the Sarcoma Foundation of America, curesarcoma.org . This is for my work as a list manager for ACOR (Association of Cancer Online Resources). I have mentioned what I do there in my previous stories. I was very surprised to be selected and felt overwhelmed by the honor. We went to NYC to attend the SFA Gala to receive the award and also to attend the Education Forum in conjunction with the Gala. This was an unbelievable experience and one I will never forget. I am not used to being honored and do the work I do to help others with this rare cancer come together for information and many kinds of support.
Now I am I preparing to attend Team Sarcoma in Vermont. This event is to spread knowledge of Sarcomas and to raise money for research grants for Sarcomas and is run by the Liddy Shriver Sarcoma Initiative. This has become a worldwide event with tremendous outreach possibilities. I am now on the LSSI advocacy board and hope to continue to contribute there for a long time.
I know I have been very blessed to lead such a long life with a disease like this. While I would rather be healthy and know I am here by the grace of God, I hope and pray I can continue this service to others for many more years. Knowledge is power and the knowledge we share on Sarcoma, Osteosarcoma, and Liposarcoma and the other various sarcoma groups gives us information and the power to proceed toward the cure.
- I still encourage all who have a sarcoma to see the sarcoma specialists and be treated by a multi-disciplinary sarcoma team at a designated sarcoma center if at all possible. A great site for lots of information on sarcomas is located at
Sarcoma Post It Links