Synovial Sarcoma

Shaninani Member Posts: 1

My husband was diagnosed back in Sept of 2010. Sunday he was fine doing yard work and Monday he came home with a limp. By Thursday we were being turned down by our first surgeon. More would turn us down over the next week and we would end up having to go more then an hour away for treatment.  They knew then before they did the surgery that he had 5 spots in his lungs and for about 5 years they just watched them as they were to small to determine if it was childhood asthma scars or scar from pneumoia.  Then in March 2015 they finally did surgery to remove the 2 on the left and they were synovial sarcoma.   In August they decided to do pin point radiation to the right hyler area.  About 4 months later (July/August) he developed a cough, they did a scan and said the lung had folded in a weird way.  Then at 8 months his cough was worse and they said there was fluid in the lung and diagnosed him with radiation pneumonitis.  They put him on high dose steriods.  Then during Hurricane Matthew his cough got bad enough to break a rib.  We went to the primary care Dr. since our daughter had been around him with bronchitis.  She sent us to the emergency room, he had a 90% pneumothorax from maliganat plural effusion.  He was in the hospital for 9 days and underwent 2 pleurocentesis, and  placement of a chest tube and biopsy.  His simple tumor had become a complex tumor.  Now we are back at our speciality cancer hospital every 21 days recieveing ifosomide and adriamycin.  They are keeping him medicated and other then mild nauea and being tired he is handeling it like a champ.  He has been told that without chemo he only has months to live, if the chemo works then possibly years.  He is just handling all of this better then I am as a caregiver.

I feel like I am not swimming anymore.  The whole "just keeping swimming" is not working.  I feel like I am in quick sand and sinking more everyday.  I feel guilty when I leave the hospital on his stays, I feel guilty if we are home and I go off without him, I feel guilty when I go to work which I have to do as I carry the health insurance.  I am just at a lose as to how to get over this daily guilt.  If I sit at the computer and play a game while he is napping I feel guilty.  I have gone to my primary doctor and she put me on medication so I am not crying every five minutes.  I understand that a lot of this is him keeping his spirits up and being positive through threatment.  I am just struggling with it.