Wednesday, February 09, 2005

Well several things to update at this point. Dr. BC called me yesterday and we discussed a few things. I told him I was doing well from the surgery and the other symptoms had eased up. Still here but not bad or even worth complaining about at times. I told him I was getting the calcitonin and seratonin tests done today and hopefully the adrenal function test done then as well.

I asked him about the carcinoid thing again and he explained it to me. The carcinoid has more to do with the MEN2a than it does the medullary cancer. IF I have a carcinoid (he can't be sure until we test more and so on) then it's not from the medullary cancer. He also said that what's in my liver wouldn't be spread from the carcinoid that it would more likely come from the medullary cancer. So the small intestine IF it's a carcinoid has nothing to do with the medullary cancer or my liver. Seperate thing altogether.

The biopsy on my liver came back. The nodule that they removed was NONCANCEROUS. It was just a fibrosis meaning it was just a nodule of excessive connective tissue. He said there were a few of them that he saw. Of course, I jumped and thought that maybe that meant the other tumors/spots in my liver could be the same thing. He said not very likely and he wouldn't even suggest as much to me. :( So whereas most people would be glad the biopsy came back noncancerous and just a bunch of tissue I'm honestly upset because it just means we didn't get the right thing. Dr. BC said we will need to get a fine needle biopsy (where they put a small needle into the liver over and over taking out cells from the tumors and putting them on slides) on the liver now to find out what's going on with the tumors in there.

We discussed what will be done if I am in the study and what will be done if I'm not in the study. Basically it boils down to same thing is done no matter what. I have to have the in depth thyroidectomy because I have to have my thyroid removed, the lymph nodes on probably both sides of my neck, all my parathyroid removed and reimplanted in my arm, and everything scraped clean. Even if I do the study this will all have to happen because two of the nodules in my neck are completely calcified so they won't be able to shrink or anything from any medicine. For my liver we would have to remove part of the liver and remove the tumors as well. How much of the liver would depend on how much we find in it. The tumor in my small intestine has to come out no matter what too. So the study isn't going to change anything as far as what I have done. I'm still going to need these surgeries which I already figured I would anyway.

I had an appointment with Dr. L today and just caught her up on everything trying to get her back on my side and in the ballgame. She said my symptoms sound like carcinoid syndrome as well and was asking if we'd set a date for the thyroid surgery yet. She also told me to talk to Dr. LK about what options I have if I don't join the study. After talking she ordered some more tests on top of what Dr. BC ordered and then sent me down to the lab to get everything done. I have to go back at 8am in the morning to get the adrenal function test so that should be fun. I'm not allowed to eat anything and I have to hold off on taking my meds until after the test. Hopefully the results from the bloodwork today and from this test tomorrow will be back in time for my appointment with her next Wednesday.

Later in the afternoon Dr. Wells called and I was honest with him. I told him that me being in this study is going to cost us around $3000 and we just don't have that kind of money. He again told me that he thinks this medication is my best bet and I really need to be in the study. I told him we're just trying to figure out how we would afford it AND we worry about me driving 9 hours one way twice a week for 7 weeks. That is alot of wear and tear on a person. He said he would see what he could do about helping with the costs and get back to me. I also told him what Dr. BC said about the liver so now he wants to talk to him in case the medullary cancer HASN'T spread to my liver.

It's sounding like I'm going to be making a mad dash appointment to Tampa next week to have cells taken from the tumors in the liver. If the tumors in the liver aren't medullary then they have no need for me in this study. I don't dare hope at this point because my luck isn't good. A part of me though is screaming that maybe the cancer hasn't spread past my throat. Maybe we can take it all out and I won't have to battle it the rest of my life. Maybe the tumors in my liver are just more excessive tissue...with MEN2a it IS a possibility to make excessive tissue, have a second spleen, an extra optic nerve, and so on.

So if I allow myself to dream (and I will for a minute even though I know in my heart it's not true) then the medullary has stayed in my throat and we remove that and I don't battle that cancer the rest of my life. The tumors in my liver are just excessive tissue/fibrosis and we remove that. The tumor in my small intestine is a carcinoid and we remove that and then... I'm cancer free. Maybe not forever but I would actually be cancer free. And I will stop my dreaming there because I'd really hate to hope that much.

Anyway- so Dr. Wells is suppose to call me back after he talks to Dr. BC. We still don't know if I'm going to do the study or not. The thing holding me back the most right now is the traveling. I'm also having moral problems with this because it just floors me that patients actually have to pay for the testing and pay all these other expenses. I just don't get how people can be that cold. Well considering it is a pharmaceutical company I CAN believe they can be that cold. Everything is money with them. I'm just sorry that Dr. Wells has to go through these people in order to help us because he truly is a wonderful man.

Dr. NW- the one I was going to have as the kids' pediatric endocrinologist emailed me back today. I will just take this chance to say the first thing out of my mouth was "bitch". Not very nice of me and I feel like a jerk admitting that but at least I'm honest. She had the audacity to tell me basically that I dropped the ball and refused care for the kids. Then she tells me to find my own surgeon and she will just see the kids after their surgery is done and over with. So long story short I emailed her back, told her off in a very nice way, and fired her. So now I get to find another ped endo for the kids AND a surgeon. UGH. WHY am I the one who has to do everything while THEY get paid to do nothing?

So tomorrow I have to go bright and early for testing, find a new ped endo, look into a surgeon for the kids, hopefully talk to Dr. Wells, and email Dr. LK. *sigh* Does it EVER get any easier?

Oh yeah and Dr. L never called because she didn't get my email until tonight for some reason. Gotta love Yahoo mail. So it wasn't her fault that she didn't call.

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