Should I be this frustrated??????

So I was diagnosed on 7/24 by a doctor in Birmingham Alabama. It was a whirlwind day. We went in thinking that I had a tumor in my hip and that I was going to be expecting some kind of surgery and maybe radiation or a little chemo once it was removed. We found out it wasn’t that and hours later we were talking to someone telling me I had CCA and had 12 months to live (blah blah blah, old numbers that don’t apply to me, I know now). They scheduled me for all of these tests and procedures (port, liver biopsy, pet scan…you know the drill) and we got set up for chemo in Birmingham. I live in Montgomery which is about a 1.5 hour drive to Birmingham. I didn’t really like my doctor in Birmingham from the beginning and I planned to get a 2nd opinion anyway.

So I went to MD Anderson a couple months later. (I had already started chemo and MD told me I needed to finish my cycle before they could get me in). I love my dr there. She gave us much more hope (even though I know that, right now, I only have a couple years unless some trial drug works for me down the road).

MD Anderson told me that I would be on cis/gem until it stops working and then another drug (Folfox I THINK. I need to look at my notes but it’s not important right now). She said that she may give me a break from the Cisplatin for my kidney’s and just do Gem after about 6 months of treatment. Then, once all of that is done, I will start trials.

So, I told all of this to my Doctor here. At my last appointment he asked me if I was going to have my CT scans done in Birmingham or Texas. I told him, at the time, that since I was feeling so good I didn’t really see any need to go all the way to Texas for my follow up this time. My Dr at MD told me it would be fine for me to have CT scans done in Birmingham, although she prefers that I have them done in Texas.

WELL, my biopsy results came back that Birmingham sent in and the study they did only covered 45 genes. So MD wants to do another biopsy (there isn’t any tissue left from the last one) and they said they could just do CT’s the same week. So I told Birmingham about this, told them my appointment date, etc.

Well, I’m supposed to start my new cycle (2 weeks on, 1 off) this Friday. For some reason, even though I saw my Dr. here in Birmingham just a few weeks ago, he wants to see me again next week. And I told them that I was supposed to start my cycle here this Friday. He said he wants to see me on the 12th instead DURING my infusion. So it’s not like he needs to see me before I start my next cycle because I WILL BE STARTING it WHILE HE IS TALKING TO ME. I just don’t see the point in missing my start date this Friday. I’m just so annoyed with the whole process. I feel like every week is just so damn hard to get organized. His nurse came to see me at my last infusion and she made a statement like “well he said he was going to give you 6 cycles I think right?”. I reminded her about MD Anderson’s plan and that I’m pretty much going to be on chemo forever and she just seemed a little bit confused about the plan in general. It’s like they don’t have a plan after 6 cycles. It doesn’t make any damn sense because I TOLD them about the plan.

Has anyone else had trouble with their 2nd opinion working well with their 1st opinion??? Even my Dr knows that MD Anderson deals with more CCA patients than he does. He TOLD me that they have 1st run trials and that it was good I went there. He should be working better with them but he ISN’T and now I’m missing the beginning of a cycle this Friday and I don’t NEED to. I don’t have a SINGLE symptom from chemo. I’m not sick, my counts are fine, I have tons of energy (as long as I drink my water), and I am pain free all the time. It pisses me off to miss a cycle that I don’t need to. Everyone keeps telling me about how AGGRESSIVE THIS IS so why miss when I don’t have to? I just want to scream at people right now.

I aplogize for the ranting but I just got off the phone with them and I just don’t know who else to talk to. Noone else understands. I just feel so alone in this moment and I’m so freaking mad.

I try so hard to stay positive and to not let stuff get to me and I’m so lucky to be so healthy right now but I’m so scared of the future and I know it’s not always going to be this good. So I hate to do anything that could put that in jeopardy. Maybe I’m overreacting ( I know missing a cycle isn’t the end of the world) but I just need to feel like my Dr’s are on my side and I just don’t right now.