Well I saw my dermatologist on Wednesday, then my PCP, and received my Benylsta infusion today or I guess yesterday giving the time it is.
The dermatologist informed me that if I'm willing to proceed with the treatment, (which I do) that I will have to be admitted to the medical center 3 days maybe 4 of each week for a period of 1-2 months. As some of you know my stay last weekend was terrible.
I was so upset that I can't go to a different hospital that is connected to the medical center. I know this all seems excessive but really I have NO choice but to attempt this treatment plan. If this works he told me he will publish my case for the medical journals. My only other option is Radation, which I'm not how they'd get the small ones on my arms, legs, knees, stomach, you get the picture.
My oncologist told me today that 1.) the military Drs have NO permission to practice there. 2.) He said that the nurses in the chemotherapy treatment room CAN NOT access my port and deaccess it. 3.) that the Drs and staff there at the medical center i need to go into, do not care for patients questioning their orders. The military Drs encourage patients to question everyone whose dealing with health issues.
He said be firm and don't let them push you around. I will send an email to the dermatologist and voice my concerns to him. He informed me that the more medication I get in my system, the worse the side effects will become.
So I'm going into the hospital on Monday most likely at night and hopefully out by Wednesday but it may be on Thursday. I'll be kept as an inpatient so they can keep me well hydrated. As long as my kidney functions go ok and my WBC holds up we will continue on till something begins to happen.
I have to say I'm really getting really fed up with as sick as I am. I kow I'll only worsen as time passes. I feel alone and despondent. I just don't know how much longer I can continue on like this.
My back pain is at a solid 8/10. I have a friend coming to visit in the AM, she a missionary in Nepal. I hope I feel better tomorrow to enjoy the visit. Just wanted to update you all. Hope all of you have a low pain weekend. Thanks for supporting me, I may be bugging you all a bit, but other then you all I don't have someone to talk to.
Hope you all have a good weekend, I'm off to bed and my heating pad.