Apr 23, 2018 Latest post:
May 16, 2018
You have reached the CaringBridge website of Sue Claridge. My rare cancer is called Pleuropulmonary Synovial Sarcoma, plus some other large words that I haven't learned to spell or pronounce yet. I appreciate your checking in, being encouraging, and offering help. I love my life, even if it has cancer in it. Thank you for making it more beautiful.
On March 2, I couldn't breathe easily and went to see my doctor. An x-ray showed a pleural effusion, which is where the natural liquid that surrounds your lung(s) goes overboard and makes too much. My right lung was completely deflated, occasionally bumping into my heart, which made my heart race now and again. The Emporia hospital shipped me to Topeka where I spent 16 days. I had several procedures plus a surgery that got rid of the pleural fluid and stretched my lung back out to re-inflate it. While performing this surgery, surgeons found a mass in my diaphragm with lots of necrotic (dead) tissue. They removed as much as possible, but some remained embedded in soft tissues. Several tests finally revealed that this tumor was cancerous, a synovial sarcoma.
Interestingly, I have had a pain in my right side since I was thirteen-years-old, exactly where this tumor was located. It often hurt terribly and especially when I inhaled. My surgeons scoffed at the idea that I could survive a 43-year-old cancerous tumor, however, I felt validated having found the source of ongoing pain. Since I was a teenager, I have been hospitalized, seen numerous doctors, and still, no one could pinpoint why I had this pain. In the 1970s, technology couldn't find it. Later, doctors just dismissed it and didn't think it was worthy of an expensive test. It was found almost by accident. Now that is has been found and found cancerous, I will be seeking more medical interventions.
I am currently being treated at the Cancer Center of The University of Kansas Medical Center (aka KU Med). The full diagnosis is Pleuropulmonary Synovial Sarcoma with right sided Pleural Effusion - Malignant, and it is Stage III. While I have been referred to M.D. Anderson in Texas and another surgeon in Indiana, Blue Cross Blue Shield of Kansas refuses to approve the life-saving surgery I need. I am receiving chemotherapy to shrink the tumor, but I must have the tumor removed. It is localized and isolated and means losing my right lung, pleura, and parts of my diaphragm, but without the surgery, my life will be tremendously shortened. I have a good shot at beating this cancer, but BCBS will not allow me to go out-of-network and no surgeon in network will perform the surgery.
I have felt ecstatic at the chance to live and horrified that it may cost me a lung. It's hard for me to contain such opposing emotions. As a flutist for 45 years, I may not be able to play the flute when I am done. While that is sad, I will manage. I hope the chance to live because right now my cancer fight starts with my insurance company.
In the meantime, I cope with edgy humor. Certain aspects of this whole process just make me laugh. I hope you'll laugh with me because my life is beautiful and part of that is just embracing funny moments.
** SPECIAL REQUEST** Cancer is scary to hear about. Sometimes that fear can lead to cancer shaming. It's okay to wonder why this happened to me; I have "why me" moments, too. Please avoid telling me all reasons this might have happened to me, because it doesn't help and often hurts. The truth is we don't know. Just be grateful that you are okay, because I am glad that you are. If you have heard of a wonder cure for cancer, please don't try to convince me to try it. I'm making very difficult health decisions and the choices are brutal. Adding more work to that process feels overwhelming. I have some of the world's best doctors helping me, so I feel confident in my choices. You can be certain that I am doing my homework and I am fighting. I invite you to join me in the peace I have from those decisions.