Day 54- Wednesday, August 8th, 2007
8 08 2007Not much to report today. I have the appointment with Dr E tomorrow. I have been trying to get multiple appointments for the same day. Dr E will examine me, but he is not in the radiation department. I have the feeling though, once he sees how big the tumor has grown and hears how long I have been waiting for treatment, he will send me straight on to where I need to go. I am hoping for the trial run and tattooing to be done tomorrow after my morning appointment. The woman I talked to today in scheduling said that that does happen often. After everything I have been through just trying to get to this point, I’m not holding my breathe. I hope to be home tomorrow evening with new decorations on my back side. I’m going to pack a bag just in case. If they say Friday morning I will have to stay over. Whatever. The sooner I can get this party going, the sooner I can get it behind me. (no pun intended! Ha)
This morning, I defrosted my frig. De-iced is more like it. I have some other housework that needs to be taken care of today. I feel like I am “nesting.” They say you can tell when a woman is about to give birth when she starts cleaning her house with a tooth brush. The subconscious mind in tune with the body. My body knows that something has to be done.
Now.
Or in this case, tomorrow will have to do.
I’ve read a little of your story. I found your site by googling blogs with sarcoma. My teenage son has a very rare abdominal sarcoma so I am often searching for others with his type of disease (yours are not the same, but I read your story anyway!).
I noticed that you still don’t have a diagnosis and am concerned about all the delays you’re experiencing. With a diagnosis of any sarcoma it is essential to be treated by a sarcoma specialist at a Sarcoma Center. I know that is not always possible, but sometimes doctors will work it out that you can be treated locally once you have a treatment plan from a sarcoma specialist. I don’t know if you are seeing a regular oncologist or not, but they often do not have the expertise to handle this type of disease. I know you don’t know me, but please do the research. I’ll provide some links for you. The misdiagnosis and delays you are experiencing are common for those who have sarcoma. Regular surgeons, doctors, and general oncologists rarely if ever see sarcoma in their practice and end up treating it incorrectly.
Here are a few websites for some information about soft tissue sarcoma:
http://www.sarcomaalliance.com
http://listserv.acor.org/archives/sarcoma.html - sarcoma mailing list
http://www.liddyshriversarcomainitiative.org/
http://www.cancer.gov/cancertopics/types/soft-tissue-sarcoma/
http://www.nccn.org/professionals/physician_gls/PDF/sarcoma.pdf
http://www.curesarcoma.org/chapterProcess.cfm?state=OR
http://www.cancer.gov/cancertopics/factsheet/support/financial-assistance
http://www.cancer.org/docroot/MLT/content/MLT_1x_Medical_Insurance_and_Financial_Assistance_for_the_Cancer_Patient.asp
Best to you and I hope this doesn’t freak you out too much.
Patty R
http://www.caringbridge.org/me/nathan/
Thank You Patty.
The surgeon at the university that I call “House” is the foremost expert in removing sarcoma’s on the Northwest coast. I am fortunate to have him at least. He has set out a plan. It’s just getting the plan into action that is my problem. I will find out today how quickly this treatment center can move on House’s orders.
I will be praying for your son. As a mother, I am worried for you too.
Thank you for the links. I will check out each and every one.
Teresa