Friday, May 26, 2006

I hate this blog...

I really do. I hate coming here to post and I hate reading over the old posts. There's never much good news to talk about and it reminds me of the bad news. I know what you're saying (if anyone even reads this thing at all anymore), you're saying "Well then quit blogging here" and I thought about that. If I quit writing or took the blog down though then I would have failed at the whole reason I started it in the first place.

It's here to document our life with MEN2a, that's true but it was also started so that no one else would ever have to type "MEN2a" into Google and see nothing but medical links. It's here so that people newly diagnosed with this disorder can see that there are others out there with it as well. Real people with real lives just like them. I hope it helps them and makes them feel less alone because this is definately a lonely disorder.

So anyway- Calcitonin levels on the kids came back barely traceable meaning that at this point we consider them cured of medullary thyroid cancer! We will still check them yearly just to be safe but we can breathe a sigh of relief none the less. Their 24hr urine and calcium levels also came back normal so no adrenal cancer or problems with calcium levels for Big B this time. Sis had to have her Levothroid raised again though which isn't a big deal. She is now up to .125mg and Big B is at .150mg of Synthroid.

Me on the other hand... I'm still a train wreck. My calcitonin levels are back on the rise again. I knew it was going to happen but I think a part of me was holding out. It's still very low though so I've still got time. My intact PTH is higher than it's ever been which caused a lively conversation between me and the endo. He has basically admitted now that he was wrong before. The last test they did here my intact PTH was supposedly "normal" and he felt that the previous two tests in Georgia were wrong. Well now my PTH is over 1300 so he feels the last test here was probably wrong. *eyeroll*. What is he going to do about it? Nothing of course. He feels we should leave it in there since it's not making my calcium skyrocket. My calcium was at the high end of low as well but no follow up bloodwork to keep an eye on it.

The verdict? FIRED!!! My life is too short to deal with bullshit plain and simple. The tumor in my intestine? No clue. I took a disc copy of my ct scans from Georgia to him so he could compare them with the ones here and we could figure out once and for all if there is a tumor or not. All I got in return was make a copy and he'll have radiology take a look at it. I'm glad I don't have a progressive cancer for crying out loud!

So anyway- my 24hr urine came back fine so no signs of the adrenal cancer coming back. I had an appointment on May 17th with a rheumatologist to be tested for fibromyalgia. The verdict on that? I have fibromyalgia. In some ways I'm not phased one way or the other by the diagnosis. In other ways, I'm glad to at least have a diagnosis so we can start trying to take care of my pain. I've been in constant pain for almost a year now and it has sorely worn on me to say the least.

The rheumatologist also said that I have to reduce my stress because it is causing the pain to be even worse and damaging me (stress not the pain). He said he didn't care what it took but stress must go down. So what has my family done since to help? Not a damn thing. The kids still take turns upsetting me and stressing me out and my husband is the worst of all. I honestly think the man could care less whether I live or die. There is no feeling there at all and definately no care to help reduce stress for me. He is just as rude as ever.

I still can not for the life of me lose weight. I lost a total of 4lbs but the new meds I'm on have caused me to gain them all back. It's hell being in pain, miserable, AND fat. So you see, again nothing great to post about.

The wonderful thing though is the results for the kids. I am more than happy with those results and will gladly trade me having crappy results for them. It is well worth it. Having my kids be healthy and cancer free means more to me than any diagnosis I could ever get for myself.

3 comments:

Elder Faery said...

My father's just died of cancer and as a result I am scared sh**less about death now. I am halfway through your archives and only slightly hysterical with grief. The stress is incredible. It doesn't help when one's partner appears to be completely devoid of feeling....

I hope you DO continue with this blog. And please excuse me rolling out the clichés, but: you are so brave. 'Lys på din vej' (Danish for: 'May Light shine apon your path')

4 girls and 3 boys said...

I leapfrogged over here from EF blog. Just to say I have fibro too. I have had it since I was 23 after a road accident set it off. I am overweight too. I used to be very slim but not anymore. It is hard going when you have kids to see to and little help and all the other stuff you have had going on too..((hugs)

Jo said...

Thank you both very much. I appreciate you reading this. I know it can make the eyes glaze over from boredom at times. LMAO.

EF- I'm sorry about your dad. Truth be known, death scares me too. I think I'm ignoring it more than anything right now you know? As for my husband- I think he just doesn't get it and nothing short of a 2x4 to the head is going to make him get it either. I have a feeling that when I start getting really sick he will be in for one helluva shock.

4G&3B- I'm just learning about fibro and honestly think mine has been brought on by all the surgeries and MEN2a crapola. I can't imagine having it from 23 on. Having fibro and seven kids? I think you are my new hero! Truly!