I honestly can't gather my thoughts enough to make a good post but I wanted to at least post a few things.

First is Sis- she is doing so well on the Levothroid. There haven't been any headaches since we switched from Synthroid. It's so wonderful. I let Dr L know because she was interested in seeing if it would work.

Second- I had them draw some blood today for calcitonin levels, intact PTH, and thyroid panel. We are moving at the end of the month and I figured it would be a good idea to take all those with me to the new endo. I also wanted it because I've been getting pretty sick lately and I have an idea what's going on but figured I better check to make sure.

Third- I had a really nice surprise today. After my bloodwork a lady stopped me in the hall asking if I was... well ME. lol. I told her yes and she introduced herself as Carol Hutchinson (I hope I got that right, if not let me know. ;) ). She is the supervisor of the lab that the kids and I have gotten all our bloodwork done. Carol told me that she has been reading my blog and even stayed up until 3am one night reading. She told me that reading this has given her a new outlook and perception on how things are for patients. She even teared up some and it was truly touching.

I was honestly in awe knowing that not only had she read this blog but it also touched her. THAT is what I've been hoping to do all along so it was nice knowing I'm accomplishing that. I told her I wanted to apologize for how upset I got in the beginning because I know now that it wasn't her lab's fault when bloodwork was messed up and that it was Quest Diagnostics that kept messing up. I also told her that the girls who worked in the lab are great. Sis adores Theresa and if it wasn't for her I honestly think Sis would still freak out everytime she has to go for bloodwork. I'm really thankful for all they've done.

So to Carol and the girls in the lab at the Valdosta Specialty Clinic... thank you for this past year. I appreciate the job you have done and all your help. Thank you also for letting me know that the medical community is reading this blog. I hope you found your way back after I gave you the new URL, Carol and thank you again.

As I've reported before, Sis has been having bad headaches since her thyroidectomy in March. We've had a full blood panel done and it came back fine so we've been stumped as to what it could be that is causing this. Well I was reading on the ped thyca group I'm on and one of the moms was talking about how her daughter kept having headaches too. We both realised that both of our children are on Synthroid and we were both trying to figure out what could be causing this. Another lady posted that her daughter switched to Levothroid and the headaches went away. So I started to do some research and found that Synthroid can cause severe headaches in children in some cases.

I called Dr L's nurse and told her to tell Jen that I want to try Sis on Levothroid to see if she gets better. We also agreed that she would see a neurologist as well and we would test Sis for pheos just to be safe.

Well I am happy to report that one week later the headaches seem to be gone. Sis hasn't complained of a headache all week and I haven't had to see that awful pale face she gets with them. I'm just hoping they stay gone so my babydoll can feel normal again. Her test results for the pheos also came back on Friday and they showed no pheos so I honestly think it was the Synthroid.

Big B's results came back as well and he is hypocalcemic again so he has to go back UP to two Rocalcitrol a day. He's not a happy camper but he knows he has to do what he's told and that this is serious. I think his levels were 8.2 this time so not horribly low but not where we would like them either.

I can't remember what else I needed to post so I will just have to update again later. :(

It's My One Year Anniversary Today

Today it has been exactly one year since I received my cancer diagnosis. All these thoughts roll through my head and all these things I want to say but I just can't. I remember how scared I was when the doctor told me the news. I was so afraid that I wouldn't make it to Christmas. I thought this was my punishment for something I had done wrong somewhere in my life. It hit me so far out of left field you would have thought I was playing a whole different ball game. I never expected it is the least I can say.

I remember wondering what was going to happen to my kids. Would they get to stay together with me gone? Would they think kindly of me? Would the oldest two hate me for screwing up their lives so badly? Would Lil Man even remember who I was? Would they miss me after a few months? I didn't want to leave my babies and I sure as hell didn't want to go out like that. Never in my wildest dreams did I think I would ever have cancer and definately not a rare one.

I also felt so much sadness for all the "wastes" in my life. The years I wasted with stupid men, the years moving my kids to survive, the years I put up with my family, ... just everything that in reality was worthless that I had spent so much time on. I wanted all of that time back so I could redo them with my kids.

Now a year later, well I know I won't die before Christmas. Neither last year nor this year and I know that I now have 5-15 years left. I know that I have many things in my life that I need to change before it's too late. I know that I need to make sure I tell my kids I love them more. I know I need to actually LIVE my life instead of letting it pass me by. I haven't accomplished much this past year, just gone through the motions of having surgeries, getting kids' surgeries, doctors' appointments, bloodwork, and so on. Not much time for whooping it up but I hope that the coming year will be good to us and that maybe we can finally be allowed to enjoy our lives and time together.

Do I wish I didn't have to live the rest of my life with cancer? Of course I do who doesn't? But when I think of how much worse it could be I can't help but be thankful that at least I got one that wasn't progressive so I still have time to right a few wrongs in my life. It's more than many get and I know that. So thank you to whoever holds the string that is my life. I honestly appreciate being given another chance.

Finally Some Relief!

Tuesday I went to my appointment with B (actually I saw Brad the PA) and just laid it all on the table for him as far as what's going on with me right now. I told him I've having really bad mood swings that are making me some kind of looney, I am in pain nonstop, I can't sleep, and so on. I told him maybe I just finally had my breakdown and he said he wouldn't blame me one bit. So we talked for a few and he took me off the Singulair since it wasn't doing anything, put me on Zyrtec (I'm honestly starting to think my cough is from the breathing tube during my last surgery), put me on Wellbutrin in hopes of stabilizing these mood swings (which I honestly think are from all the meds the pain doctor was screwing me around on) and then once things mellow out some I can wean off them and go back to being ME again, and also gave me my Ultracet. Yayyyyyyy I was so happy I thought I was going to cry! I kid you not.

They went ahead and saw Sis too. Normal checkup and we were just trying to get her established. She had to be seen by some weiner PA of another doctor. I say weiner because I honestly think that once he saw "MEN2a" he was intimidated as hell! I kid you not. He started fidgeting and stuttering all of a sudden and then at the end we of course got the usual "You're the first MEN case I've ever seen". We know, we get that alot. lol

Tuesday afternoon- B (Dr L's nurse) called and said that my thyroid levels were actually normal now so I am to stay on the 125mg dosage of the Synthroid. That part is good news. I still have to get the calcitonin and PTH levels done especially since we are now moving at the end of the month. I want to know what my levels are now so I have a starting point when we get to where we're going. The kids' results aren't back yet but hopefully they will be soon.

Wednesday- Big B's turn at the doctor and he was given Allegra and Nasacort for his allergies so hopefully those will help him some. Poor kid has suffered from allergies (hay fever type symptoms) most of his life so I'd like to see him finally get some relief. He's more cheesed off that he has to take another pill than anything else.

I also missed the meeting with the nutritionist because things around here got so hectic that I completely forgot until the woman called me. I felt like such a jerk. :(

I never did hear back about Lil Man and made a complaint today to let them know that I wasn't happy about that. I guess we will just hope he can get in with a new doctor fairly easily once we move.

As for how I'm feeling (which I keep getting asked by several people)- I feel like crap to be honest. I feel like a person with cancer, no adrenals, and no thyroid. I feel drained beyond humanly possible BUT I try not to let it get to me. I will say it sucks though to be so drained all day long and then not be able to sleep at night. It is now after 4am and here I sit. I think next I might need a sedative once I'm off some of this other stuff. I'd much rather be able to sleep on my own though. Oh well.