Yesterday I had an appointment at the hospital for a check and repair of my port. Dr Phan wasn't able to get blood return from it a week ago or so. In my mind, I'd go to the hospital, they'd hook some pressurized connection and blow out whatever was clogging it. Instead, they checked me in for same day surgery, as if they were replacing the port. Had to go through the whole surgery rigamarole. That threw me off. We arrived at 7 am. 4 hours later, they wheeled me into the surgery room, hooked up to my port. Lo and behold, perfect blood flow. The thing was working great. "User error" the doctor said. I'm at one with my port, so getting a new one did not sound like something I wanted. Definitely relieved.
Today, we'll use it for real. It's day 15 of cycle 15 of maintenance. 24 hour urine later this week. Berenson next week.
The Leukemia and Lymphoma Society has a program called First Connection. It allows newly diagnosed patients to talk to more experienced patients with the same blood cancer. I went through training to be a first connection volunteer about two months ago. Last night I had my first connection. I spoke with a woman who had recently been diagnosed with myeloma. She had all the same fears and questions that I had when I was diagnosed. I think she was relieved to talk with someone else with the cancer. And for me, it was a nice step towards my personal goal of being relevant and giving back. Win win. On a side note, the LLS provides support for all blood cancers, including myeloma. But they don't have the M in their name. Some say this should change. I'd agree.
Gary Peterson is a fellow myleoma patient. He has a website that discusses myeloma survival rates; comparing doctors, hospitals, etc. It...
I no longer work, but I did work for over 6 years while managing my disease. For a while, I had some real challenges with human resources. I...