And yet it seems that is exactly what my life has become. *sigh*
Starting on either Sunday or Monday things just started going all to pot on me. I sent out an email checking with the girls who were going to help me out during testing and the study just to see what dates they had decided to take. By the time I received all emails back two people had to back out and another can't do it during a certain week which may be the most needed time of all. I'm not mad, I mean these girls were volunteering their time and offering to help me so how can you be mad? It was just a really hard blow because it's so close now and here I am back to square one trying to figure out what to do on top of everything else. I finally emailed my sister practically begging for help (NOT money btw) but have yet to hear from her. :(
So then I get a call on Tuesday from Dr. Olson's office telling me that they want me there for the scans on Monday and Tuesday (January 10 and 11) with a followup and pre-op with Dr. Olson on the 12th. Surgery is/was set for January 20th. I emailed the girl who had offered to help me out with/during things like that and find out she messed her back up and basically feels like hell so she can't help (If you read this, feel better soon girl and take better care of yourself woman!). There is NO ONE to help next week so I can get these scans done plus money is pretty tight around here and HOW in the heck are we going to afford a three night hotel stay, food, and gas next week PLUS an almost week long stay, plus food, plus gas the very next week after that???
I called Dr. Olson's office back on Wednesday to ask if maybe we couldn't just do the scans, visit, and surgery all in the same week so we can all just drive up as a family and take care of it in one trip. Of course, the answer was "no" but I thought I would try. The nurse said that if they find any surprises in the scans then I would need more testing and they would hate to have to cancel the surgery. Ummmmm it doesn't matter what they find on the scans because even if there ARE any surprises I can't stay any longer or make ANOTHER trip up there. It's a moot point.
I was in tears and about ready to just cancel all treatment for myself for awhile. This shouldn't be so hard and I've never felt so broken, beaten, or hopeless in my life.
A few minutes later Dr. Wells called to see how I was doing and I was honest with him. I told him that things weren't going so well and that things were falling apart. He asked me if it would be easier to have the surgery done in Tampa at Moffitt like I was originally going to. I told him time and moneywise that YES it would be easier but I just want things done!! He told me that he would call Dr. BC at Moffitt and see what he could do. About a half hour later he called me again and said that Dr. BC would be more than happy to do the adrenal sparing surgery and get this going. I was so happy I started to cry!! Dr Wells said he was going to call Dr BC again and see if we could get a timeframe here so we could decide when I'm entering the study and so on. Told me not to worry that I would be in the study and let's just get this done so I can get better.
I felt so much relief and hope things work out now. Will update more when I find out more.
As for the kids, nothing new going on with them. Again it's a matter of hurry up and wait. Things were sooooo important and needed to get done soooooo badly on all of us yet now because of either money or laziness things are at a standstill. I really hate that sick/ill people have to do ALL the work when it comes to their care. It shouldn't be like that. Doctors should coordinate and try to help you out. I mean, WE are not the ones who have gone to medical school and know what is suppose to be done.
Some people say that the internet at times holds a little too much information but for me, if it hadn't of been for the internet I wouldn't know half of what I know about MEN2a or the other stuff and would just be sitting here not doing anything because I'd trust my doctors to. At this point, I think I know more about all this than my endocrinologist and there hasn't been anything really that they have told me that I didn't already in some aspect know.
Hell, maybe when this is all done I should PRINT UP a degree and hang in on my wall in a frame! ;)