My Appointment...

I know alot of you have been wanting to know how my appointment went, and I want to thank you for being understanding and patient with me, as it's taken me a couple days to get ready to write this post. It has also been an emotional last couple of days and I want to thank everyone, especially my family for being there...I am truly blessed!
So, to start off, as many of you probably already know, Monday morning my mom and I went down to the Huntsman Cancer Institute in Salt Lake City for an appointment with the specialist for my osteonecrosis. From the sounds of things, the looks of the MRI, and the studying of how to treat this, it sounded and looked like we were looking at some upcoming surgeries to "fix" the dead bone and take care of things--whether the surgery would be joint replacements, bone grafting, or what exactly. I was very anxious as my appointment neared, and although I'm definitely not wanting anymore surgeries, I want my leg (especially-that's where it is the worst) to get better and the pain to go away...dead bone is not a very good feeling! However, I wasn't quite ready for what came!
The doctor, who was SO KIND and WONDERFUL, told us that there's nothing they can do for me right now! Since I'm on the steroids, for my adrenal glands, they can't do anything at this time. He can't do the bone grafting because they can't use cadaver bone for it, and, since they usually take the bone from the individual's (my) pelvis, they couldn't do that either because it would be taking bad bone and replacing it with bad bone....because most of my bone isn't good right now. As for the joint replacement, 1-he doesn't want to do a joint replacement in someone as young as I am; 2-he wouldn't want to do the replacement until we're at the point of the bone actually breaking down/collapsing/fracturing; 3-with being on the steroids, it  may not heal correctly/well and he doesn't want to do anything that could cause more problems than where we are at now. So thus, nothing he can do right now.
He said that all we can do right now is basically hope and pray that my adrenal glands start working and that I can get off these steroids! So he ordered baseline MRIs of my hips and knees (which I had done yesterday), and then, when I can get off the steroids, we will wait 3 months and he will redo the MRIs and see if there are any changes. If things are starting to heal on their own from being off the steroids then we will let them continue to hopefully grow and progress on their own, if things aren't healing then he will look at things and decide from there what to do. However, as my mom asked him: 'What if she can't get off the steroids?' (which this I think is the part that was probably the hardest for my mom and I to hear)...he replied, if she can't get off the steroids, then her bones can't/won't heal. And all I could think of was, 'Seriously?! So if I don't get off the steroids then I just live with letting my bones keep dying and there's nothing I can do about it? I felt/feel like I'm between a rock and a hard place--stay on the steroids and let my bones continue to die or go off the steroids and not have my adrenal glands working fully!' (I mean obviously I know what I have to do, but it's still hard!) I couldn't keep it in any more and the tears just came--yep, right there in the doctor's office with myself, my mom, the doctor, the nurse, and the fellow (I think there was either one or two fellows).
I was just sitting there crying, my mom had tears coming out, and (this is where the kind, wonderful doctor part comes in) my doctor was just so compassionate and understanding!!! He got me a kleenex and just sat by me, rubbing my knee, and telling me how sorry he was, how horrible this is, that he wishes there was something he could do, that this sucks (yes, his words--not too many doctors will say something 'sucks' haha), that this was going to be a long road (that we were going to be seeing a lot of one another over time), and that he will be there for me through it all (that even while I'm on the steroids and he can't do anything right now, he'd still see me as I needed and even if it was just to talk about how frustrating, horrible, and unfair this was, to explain things, or whatnot)! Then, before he left, he gave me his card, put his arm around me, kissed the top of my head, and told me how sorry he was! Seriously one of the most compassionate and understanding doctors!
So, that is how my appointment went, why it has been an emotional last couple of days, and the reason as to why I didn't write the day of my appointment. My mom is so sweet and amazing...that day she just took off the rest of the day from work and spent the day with me--keeping both of our minds busy--going to my sister's house and hanging out with a couple of my sisters, running a couple errands, and watching a Hallmark movie; then yesterday, my sister Janeice took me out to her house to hang out for a couple hours, dropped me off to my mom when she get off work, we went back up to the Huntsman for the MRIs, and just talked about everything...I love her and am so grateful for her and all she does for me, and also the rest of my family and all they do for me!
Anyways...I will continue to use this blog to update as to what's going on with things--my adrenal gland testing, what we find out with the osteonecrosis (from the steroid stand-point), and so forth.