Monday, December 19, 2005

Just Updating/Logging

Nothing great or exciting happening. The insurance company ok'd the arm splints for my carpal tunnel but haven't heard anything about the kids seeing a decent doctor yet. I forgot all about calling to schedule my physical therapy until I found the card today so I guess I still need to do that.

Retook my CT Scan and thankfully they used some kind of gastric contrast stuff (sounds really medically correct doesn't it?) instead of the barium shakes. I still got sick but only a little bit and nothing like the hell I usually go through with the barium. Hopefully this time it will show the tumor although a part of me keeps hoping it's just suddenly gone. I don't feel like being sliced open anymore. They've done enough damage and made me look hideous enough. I just want to be left alone now.

I'm sleeping more finally thanks to the new med the general doc gave me. It's nice sleeping through the pain instead of staying up because of it.

Other than that I've just felt crappy, Sis got some 24 hour stomach virus last weekend and then Bret got it this weekend so I'm sure I'll be next. With my luck it will either hit me on Solstice or Christmas. LOL. So again, nothing exciting or wonderful. I may even just go to once a month updates since things have slowed down and gotten pretty boring. I'm sure people don't want to hear about everytime I start a new stinking med or get blood taken. :)

Friday, December 09, 2005

Check Please!!

I'm so tired of bloodwork, scans, tests, pain, and just crap in general. It's beyond old at this point. Anyway- on to the medical stuff that I know everyone reads for.....

My 24 hour urine test (the one that tests for pheos) came back a little odd. Everything on it but the metanephrines were on the high end of normal and the norepinephrines were elevated at 524 (normal HIGH end is 480). So I don't know what that means except that we have to redo the test again to see what it says a second time. *sigh*

The CT Scan showed no tumor in my intestine. Of course, that is most likely because I didn't have the barium so even though it wipes me out for almost a week it looks like I'm going to have to do the barium so we can get a good look at the bugger. The scan did show a hepatic hemangioma which I guess I've had since at least May but no one bothered to tell me about. I got a little excited thinking that MAYBE this would be the answer to all my liver pain but Dr G says no so I still have no clue why every few months I feel like some witch is sticking her stilletto heel into my liver and twisting. :(

So I'm sure you've gotten the jist by now- EVERY stinking test I have done since I've been here has to be REDONE. :( We have to redo the intact PTH because after months of tests showing it being so high I'm not going to rely on one test saying it's not. We have to redo the 24 hour urine because of the results on that. We have to redo the CT Scan because it didn't pick up the tumor in my intestine. What next they redo the MEN2a test and show it was actually negative? Obviously that's not going to happen it's just getting so damn frustrating. Just when I think I know everything that's going on with my body I come here and they are telling me that everything is the exact opposite. It makes me want to run fast and far away from them.

Went to the general doctor today because the pain in my limbs is spreading and getting worse plus a bunch of other junk going on. So he said he still thinks the limb pain is neurological so we're sticking with me seeing the neurologist, the right flank pain I've been having for around eight months he feels is muscle spasms, and the getting sick all the time thing he isn't sure about. So he ordered a bunch more bloodwork to test for inflammation, arthritis, bacteria in my stomach, and orderd physical therapy for my flank pain problem. He also prescribed me something for chronic pain that is suppose to help me sleep (haven't slept much because of pain). He's also going to talk to insurance about covering the cost of my arm splints for the carpal tunnel problems.

So I'm not really much of anywhere right now. I'm also trying to get a different pediatric endocrinologist approved for the kids because the one that is on the insurance is proving incompetant already and we haven't even been given an appointment with the woman! If she really knew anything about MEN2a and my kids medical records she would know that they need to be seen soon and NO, February is not soon! >:(

I'll update again when I know something worthwhile.

Wednesday, November 23, 2005

Odd Bloodwork Results and Vomiting Kiddo

Well yesterday the endocrinologist called me with some peculiar results. My intact PTH came back "fine" he said. He said that it was nowhere near 1097. He also said that my calcium was actually low, calcitonin seemed about the same, and that the labs Valdosta used must have been wrong. Well to be honest, I would think since the levels were 515 in July and 1097 in October it is hard for me to believe that Quest was the lab that was wrong. I'm going to have the new general doctor redo the tests so I can get a second set. If they confirm Dr. G's results then we'll know it was a Quest Labs fluke and I've never been hyperparathyroid since the surgery. If they are different then we'll know the first tests here were wrong and they need to go back to planning on taking this thing out of my arm. As it is now Dr G has cancelled the parathyroid scan.

The CT scan has been scheduled for December 2nd at 8:30am so hopefully this will get things going on that.

Sis and I went to have our bloodwork done for the general doc yesterday and the poor kid ended up vomiting. I think it was a combination of the fasting, nerves, and it was warm in the lab. She kept apologizing and I kept telling her there was nothing to be sorry for. It's not like the poor thing could help it. She was okay after a few minutes and from now on they will have her lie down when she has blood drawn.

So now we wait for those results to come back and meanwhile the pain in my arms and legs is getting worse for some reason. The last two nights I haven't been able to sleep because it has hurt so bad. I'm trying to hold out for the bloodwork to get back but I may have to go back to Dr. M (the new general doctor) and have him check things out again. I'm also having horrible pain in my right flank that leaves me wondering if I'm getting another kidney blockage. It hurts to sit, stand, bend..... it just constantly feels like I have a backache AND someone is shoving the heel of their foot in my right kidney. Fun times!

*Update* Our bloodwork came back. Sis's TSH levels were at 15.27 (normal is 0.6-6.3) so she is elevated over double the normal. Odd because that would usually mean she would gain weight not lose it. So she is now on 112mcg of Levothroid and hopefully that will fix things for her.

My bloodwork all came back fine (can you imagine?? LOL) so I am now being referred to a neurologist and we will see what he says. If he can't find anything then I don't know what to do anymore. My pain is getting worse in my extremities and I'm afraid that if the neurologist can't find anything then no one will listen. So if you're reading this Dr M- please don't quit on me and please help me find the cause of my pain. It's real and it hurts and all I want is to feel semi-normal again.

I don't know where we stand on the degenerative disc thing but maybe that will be looked into more if nothing turns up with the neurologist.

So that's it for now. More to come after the CT scan because you KNOW how wonderfully I do with those. *eyeroll*

Saturday, November 19, 2005

New General Doctor Set Up

On Friday the oldest two kids and myself went to our first appointment with the new PCP doctor. I figured it was better to get in now and get set up that way if anyone needs anything later then we'll be able to get right in. It was an interesting time to say the least.

I had called ahead when I set up the appointment and asked specifically if the doctor had experience with MEN2a. I was told that he DID and that is why I made the appointment. When the doctor walked into the room the first words he said were "Well I looked this up on the internet....." and to be honest I wanted to run right then and there. The truth is though that we really aren't going to find many doctors with working knowledge of MEN2a. It's something we can expect from Endocrinologists but not General Practioners. So I decided to give him a chance.

To be honest, he did a great job. He asked lots of questions, listened to what I said, acknowledged that I know more about this than him (which I've found is hard for alot of doctors because THEY need to be the experts even though it's just not feasible), asked for the URL to this blog, and put me at ease that he would do all he can to learn how to care for us. After that he started examining us for the "normal" things.

We found out that Sis lost 7lbs somehow so we have to test her thyroid levels and we're also running an iron test on her. We need to figure out why she's losing weight because her eating habits haven't changed at all and without a thyroid losing or gaining weight is an issue. So some bloodwork and we should know what's up with her by the end of next week.

I found out that I'm just a big train wreck. LOL. We found that some of the pain I'm having in my hands is from carpal tunnel syndrome. So I will have to wear lace up braces on both hands at night to try to eleviate some of the pain. The rest of the pain in my hands and the pain in my legs stumped the doctor somewhat. He ordered a ton of bloodwork on me to make sure it's not a deficiency somewhere first. Then he recommended craniospinal therapy (which I'm still reading on) to hopefully help with some of the pain and the constant headaches. Other than that he said that MAYBE my pain in my legs could be from Degenerative Disc Disease but we're waiting until everything else comes back first. Even if it is, I'm not worried. Heck, as much as I've been poked, prodded, cut open, and hacked up from cancer and so on this is the least of my worries. LOL.

Big B gained a pound and I should have thought to get his current thyroid and calcium levels but I didn't.

Oh yeah, I also tried to get the kids in with a ped endo and was told I had to take their records to the office so they could copy them and THEN they would contact me for an appointment after the doctor read them. *sigh* I had an appointment for the kids already with another ped endo but had to cancel because of the new insurance so I'm hoping I'm not going to be made to regret this. BTW- I did take the records to them yesterday so I should/better hear back next week because this isn't something I'm willing to play with. If the kids can't get in by the second week of December at the latest then I'm having the general doc run the bloodwork for Bret as well.

Next update- any bloodtest results or scan results.

Wednesday, November 16, 2005

So Far So Good- New Endo

Yesterday was my first appointment here with the new endocrinologist. We will call him Dr. G since I'd rather not share info on where I am (mother is still stalking you know...get a life woman!) and he seems to actually know something about MEN2a and the other MEN syndromes as well. That's a nice thing considering most of them say they know something and then don't. I'm not saying that against Dr. L who was my endo before but because of all the calls I've made since then looking for someone new. After a few silent breaks on the phone when you ask you tend to get frustrated.

Anyway- he was very nice, asked my history and lots of questions, wrote down things, and thinks Dr. BC is basically an idiot too. He can't understand why they left a parathyroid in my neck considering that sets me up for future surgeries right there but the whole adenoma in the arm thing totally blew him AND the surgeon he talked to away. I told him thank you because now my husband and I don't have to feel stupid or like we just don't get it. Although, Dr L probably felt the same as well. Neither of them have CALLED him an idiot but I figure that's the condensed way of saying it. ;)

Dr. G ordered a bunch of new tests including some I just had done last month. I guess they want their labs to do it and recheck the intact PTH since it's so high. So new calcitonin was ordered, 24 hour urine for pheos, intact PTH, I'm to get a parathyroid scan to see if it's the thing in my arm or the parathyroid in my neck that is causing the high PTH levels, and a CT scan of my abdomen so we can get another look at the tumor in my small bowel. He'll get all the test results back and then I'll have another appointment to go over everything. Hopefully by Christmas I'll at least have this thing out of my arm and then we can move on to other things.

I also learned something new. A way to tell if you are on too much Cortef is that you will develop red stretchmarks on your sides. I thankfully don't have any but I thought it was a neat new thing to learn. Dr. G also said that the dosage I'm on for Cortef actually is a small dose (10mg) so I shouldn't worry too much. He agreed with Dr L that my adrenal crisis problems pretty much show that the little piece of the left adrenal cortex they left isn't working. He also said the same thing as Dr. L on the weight gain too - my chances of losing much weight are pretty slim because of all this crap. :(

So it will be a few weeks before all the results are back and then we will go from there. Hopefully by the end of three months everything will be done and I can try to get on with life for awhile.

The oldest two kids and myself have an appointment with a PCP on Friday. It's just a new patient visit so we can get set up with someone. I am also going to see what they say about getting help for my neck pain here. I'm hoping that acupuncturists are covered on our new insurance because I've tried just about everything else. It IS nice to finally be someplace that has a variety of doctors so we actually get a choice. Dr L did a great job but Moffitt in Tampa.... them I could have done without!

Monday, November 14, 2005

Note To Self: MEN2a + Long Move = VERY Sick Me.

That pretty much covers it doesn't it? I always thought long moves were hard before but this was my first one since diagnosis and surgeries. I think I want my adrenal glands back thank you very much. ;) WOW, talk about feeling wiped out! It took me a full week to recover and even know I spend most days with a migraine.

Before we moved I had Dr. L order labs for me so I would have fresh results to bring to the new doctors here. I wanted something current to go off of and wasn't sure how long it would take to get things rolling here with a whole new support system. Well, I received both good and bad news.

The good news was that my calcitonin levels are currently at 17. Yes that's a ONE and a SEVEN! I couldn't believe it! As sick as I've been the last few months I honestly expected it to have started climbing again. So what that means is that if it will just stay at 17 and not go any higher then there is that very slim chance that I could be cured of the medullary cancer. It's not something I'm getting my hopes up over but it's a nice surprise that I am enjoying right now. Also, my thyroid levels are stable and doing well.

The bad news was that my parathyroid levels (intact PTH) were very high. I went from the 515 to 1035 since July. This of course means something is VERY wrong. I probably should have run back down to Tampa and had it taken out but I can't help but feel like that would be a bad idea. The bottom line is that they screwed up BIG TIME! They put an supposed adenoma (and I say supposed because I'm wondering if they even tested it) in my forearm. Just let me say- an adenoma is a benign TUMOR okay? So they took out two bad parathyroid, left one good one in, and the proceeded to chop up this TUMOR and stick it back in my arm. Adenomas are usually the primary cause of primary hyperparathyroidism. So all they did is take the culprit out of my neck and give it new housing in my arm. WHAT KIND OF IDIOT DOES SOMETHING LIKE THIS??? Ugh!

So anyway- things are getting worse and I can't help but wonder if they stuck parathyroid cancer in my arm. I am going to have the doctors here take it out of my arm hopefully VERY soon then what will happen is one of two things. One- it will just test as an adenoma, it will be out, and my levels will drop. Two- they will take it out and test it and it will be cancer which will mean I will need chemo and rad therapy. It will also mean I will be suing because that would just be beyond disgusting. I'm not a sue happy person by the way I just don't think others should have to suffer from something like this again.

Tomorrow I have an appointment with the new endocrinologists. I had an appt set up with one I had emailed with but he is not on our new insurance so I hope beyond hope that this other practice knows what they are doing. If not of course I have the option here of looking for someone else. I promise to post afterwards and tell how that goes. The kids also have an appt next month with a ped endo BUT she isn't on the insurance so I have to start over. *sigh*

I also just want to thank "W" from Australia for posting a comment on my last post and letting me know that people are reading. It honestly means so much and I will try harder to keep this updated.

Thursday, October 20, 2005

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.

Sunday, October 09, 2005

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. :(

Friday, October 07, 2005

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.

Thursday, October 06, 2005

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.

Thursday, September 29, 2005

You ARE The Weakest Link...GOODBYE!!!

Monday night the nutritionist called me and we talked. We made an appointment for next week and she told me to keep a food diary. She's not sure she can do a whole lot about my weight because it's mostly thanks to steroids but she says she will try to help me start feeling healthier. Very nice lady and I'm glad she called.

Tuesday I had the stress test and it came back fine. They didn't see anything wrong on the EKG or during the test and to be honest, it was one of those things where if I didn't have the MEN2a they would have told me it was nothing and that would have been it. Instead I was told that if it continues or gets worse to let them know and they will do further testing *sigh*. So basically, unless I fall over or something then I'm just suppose to now deal with feeling like someone keeps squeezing my heart and an elephant is sitting on my chest. Lovely.

Wednesday I took the kids for their bloodwork and the girl squeezed me in as well so I wouldn't have to go back today. I was all for that! LOL. So we should know within a week the results on all three of us. I didn't get to have them include the PTH and calcitonin tests but I'll get those done for sure before I go anywhere.

Today I went to my appointment with the pain specialist. He finally decided to take me off the Cymbalta (I went off it three weeks ago), wanted to put me on Lexapro instead, told me to double (in other words take 4 pills a day) the Keppra, and double the Elavil. Well, I never started the Elavil and definately won't now. I asked him why an anti-depressant to help me sleep? Why not a sedative or something? Supposedly the Elavil is suppose to help the nerve pain too. I looked it up and wouldn't you know that Elavil has a caution on giving it to people who are on thyroid hormones.

So that would be THREE medications he would want me to take when NONE of the ones he has tried so far have worked. Ummmm yeah, get right on that. *eyeroll* He honestly looked kind of ticked off that I said it wasn't working and it was mixed with one of those looks like "yeah right". He also told me that mood swings, blah blah blah is part of "depression" and its not just about wanting to kill yourself. I told him "That's nice and all but I became a bitch AFTER I started the Cymbalta not before so I highly doubt it had anything to do with it". He also asked if I still felt down and I told him "No, I finally realized that I'm not going to get help with this pain so I just have to suck it up, accept it, and go on. I told you, I don't get blue for long and if someone else doesn't help me then I say screw it and go on with my life". He didn't like that too much.

By the way, he didn't prescribe me the Lexapro which would mean he was expecting me to wean off the Cymbalta, go without anything for three weeks, and then allow another two weeks for the Lexapro to kick in. If someone reading this gets this then please, by all means explain it to me because I'm not.

Anyway- fired and I'm not going back. My MRI of my neck was fine and just showed some spasming was all but that was because my back was spasming while I was getting the MRI. lol. I have that appointment with Dr B next week so I'm just going to ask him to give me some Ultracet. It won't do much but it's non-addictive and will take the edge off the pain for a month or two at least. It's better than the four months of nothing I've gotten so far.

So on Tuesday morning I have an appointment with Dr B, in the afternoon Sis has one to be set up with him as a new patient, Wednesday afternoon Big B is suppose to be seen for new patient and to get something for his allergies. I may have to reschedule that one because it's around the same time Sis is at gymnastics and she tests on that day. *sigh*. I'll figure something out. Wednesday evening I have the appointment with the nutritionist, and I'm STILL waiting to hear back about Lil Man so I will be calling first thing Monday to rip someone's bum! This gets so old sometimes.

Sunday, September 25, 2005

Mi Vida Loca!

Just when you think things are settling down they go haywire again. First of all, Sis now has bloodwork on Wednesday with Big B. We're testing her for pheos again because ever since her thyroidectomy she has been having headaches. To be honest, after reading on the Ped Thyca board I think she needs to be put on a med other than Synthroid. Dr L wants her to see a neurologist but the soonest we can get Sis in to one is November. So I'm going to ask for a switch in meds until then and see how she does.

On Wednesday we had an "uproar" in our household and I started having bad chest pains. They got really bad and after not getting any better for two days I finally went to the clinic to get checked. I figured it was much safer to go there first and be sent to the hospital so they could inform the hospital about me than to just show up and let a hospital try to kill me again. They ran an EKG which showed an abnormality in the T wave but I guess 10-15% of people have that so it's not a big deal I guess. The chest X-ray came back okay and they couldn't tell me what is wrong with me. So Tuesday I have to have a Stress Test done and we will go from there.

They said they don't feel it is an aneurism, a heart attack, or anxiety but they gave me Xanax in hopes that my chest would relax and rest would make me feel better. It's now Monday and my chest is still killing me. It's a sharp pressing pain in my heart and it does get worse with stress.

Our schedule now goes- Monday: Nothing, Tuesday: my stress test, Wednesday: Kids get bloodwork, Thursday: I see pain doctor and then get bloodwork, and the next week I have an appointment with Dr B as do all three kids (Big B for allergies, Sis just for a check up, and Lil Man for bowel troubles). It's going to be tons of fun and that's just the appointments that are already made!

Thursday, September 22, 2005

Sometimes I don't even want to update anymore because I'm tired of posting messed up stuff. *sigh*

I had my MRI on Sept 6th and when I called the Pain Specialist for the results I was told "The MRI looked fine but showed some muscle spasming" and that was it. No, seriously... that was IT! Nothing else was said or done and I was told he would go over it with me at the end of the month. So again I have been left in pain. I may need those anti-depressants yet.

Dr. B said the acupuncturist was suppose to call me within a week but here it is over two weeks later and still nothing. I have called Dr B's office three times and been told each time "Dr B says Dr Chang will call you". Gee, thanks.

Dr B's office was also suppose to refer me to a nutritionist. After over a week of hearing nothing on that one I called twice and was told "Mrs P is the nutritionist and will get ahold of you".

All I want is just to feel better. I want the pain to stop, I don't want to constantly gain weight, and I don't want to constantly feel like crud. Oh yeah, and I want doctors to actually CARE. Fat chance I know but I can dream can't I?

We tried weaning Big B of the Rocalcitrol and his calcium levels dropped so he had to go back to everyday. He was upset but not much we can do. The poor kid becomes hypoparathyroid everytime we drop the Rocalcitrol on him. He gets his levels drawn again next week to make sure everything came back up.

So next week is a blood draw for Big B, one for me for my thyroid, visit with the pain doctor to get my MRI results, and I think that's it so far. Fun times eh?

Friday, September 02, 2005

Doctor Appointments/ Updates

On August 30th I had my blood draw for thyroid levels and they came back still supressed which I guess means I'm still hyperthyroid. They were at the borderline level though so we're going to keep me on the 125mg I'm taking now for 4 more weeks, do another blood draw, and if I'm still borderline or more then I'll be going down to 112mg.

On September 1st I had my appointment with the pain specialist. What a crock to say the least. Very nice man but either very stubborn or he just doesn't care to listen at all. I told him I stopped the Zonegran as I was having allergic reactions to it. I also told him how the Cymbalta was making me feel. He didn't say anything about the fact that I'm in even more pain but instead prescribed me Keppra which is another anti-seizure med that is used for pain, kept me on the Cymbalta, and then added ANOTHER anti-depressant to help me sleep at night.

This was very discouraging and I left in tears. He also keeps pushing the depression thing and seems to get frustrated when I say that I'm fine. He even said that if the Cymbalta doesn't start working then next he will refer me to a psychologist. FOR WHAT??? This is just becoming a nightmare. The new med is also suppose to take about a month to start working so that will be four months I have been left to hurt nonstop and it is truly wearing on me.

I have not filled any of the prescriptions yet and actually started tapering myself off the Cymbalta before the appointment. I truly did not think he would keep me on something that was causing severe mood swings and not doing a single thing for the pain. There is no reason for me to be on it, I will not further upset my family by having someone who is usually the cool headed quiet one acting like a witch with a B, and it has had 6 weeks to do it's job. It's not, he's not listening, so I will be the one with a brain here.

I will fill the Keppra script and try it but I will not put myself on a second anti-depressant to sleep. I am not sleeping because I hurt. If he would take care of the pain then I could sleep. I feel very uncomfortable being on two anti-depressants when I don't have depression in the first place and the first anti-depressant is not working for pain in the second place.

At this point Vin and I are discussing firing him and figuring something else out.

On September 2nd I had an appointment with the new general practioner, Dr. B. I figured it was time to get set up with a primary care doctor plus he knows our history, has been "onboard" since the beginning of all this because it was his physician's assistant that saved our lives, and he is already Vin's PCP. Dr B is also an osteopath so I knew he wouldn't just shove pills down my throat if I asked for something else.

So I went to him to ask for alternative ways to help with the pain while I wait for this "long term" bull, to get an emergency inhaler because since we've moved in here I've been having asthmatic symptoms (first time in 4 years but no surprise considering there is mold under the sink), see what his thoughts were on the Cymbalta and what Dr P is doing, and also to tell his PA thank you for saving our lives.

Dr B is going to try to get me in with the only accupuncturist in town to help with the pain. The guy usually doesn't take new patients but we're hoping he will bend this once. I am completely excited about this and keeping my fingers crossed because I have been wishing I could see an acupuncturist for a long time now. I just have more faith in alternative meds than I do "advanced" at this point. Anyway- I should know Tuesday or Wednesday on that. He also gave me the card for a guy that does what I guess you could call "visual meditation". He is in Atlanta but will do a consult over the phone to help out someone like me. I have to see if insurance will cover that one though. Not too sure but it sounds like a great idea too.

For the asthma problems he not only gave me an emergency inhaler but also started me on Singulair for a month to see if that helps. He said with the fact that my immune system is supressed it only makes sense that environmental nasties would be getting to me too. So the Singulair is to help build a "bubble" for me and strengthen me against the environment thus keeping me from becoming a sick wheezing ball.

Dr B said that it sounds like Dr P is doing everything he should be as far as what he is prescribing me for pain. He said that while nice, Dr P is very stubborn and that I just need to keep trying to get through to him that I'm not happy with the Cymbalta and want off it.

A thing that shocked me is that Dr B told me to get in for a pap test (gynecologist) to check for cervical cancer. I wasn't expecting that one but he said it's a possibility for me and I trust his judgement.

I also finally got to thank his physician's assistant, Brad Ridge, for saving my life. I was in tears and he was almost in tears which was kind of cute considering he's a tough looking guy that you wouldn't expect to get teary-eyed. I told him "I was so mad at you for forgetting that pregnancy test because back then even though realistically I had no reason to worry, that was the worst thing that could happen in my world. Now... well I'm very thankful for you and I'm so glad you ordered all the tests that truly mattered". I thanked him also for saving my children and he asked how things were going and said they had kept up to date on us and followed our story. He asked a few other questions and then said if we needed anything at all to let them know. It was honestly very humbling for me considering how irate I was a year ago and how badly I bashed him. :(

By the way, I got to thank Brad exactly one year to the date after this all began. It was September 2, 2004 that I walked into that walk in clinic and he ordered that ultrasound. Kind of neat I thought.

Anyway- so that's the update for now. I have an MRI on Tuesday (September 6th) on my neck to get a clear picture of what nerve damage I have in my neck. Dr P actually ordered that when I told him about my pain in my hands and legs. On September 7th, Bret has a blood draw and if his calcium level is still good then he can go off the Rocalcitrol/Calcitrol. Then we will test again in three more weeks and if still good then he's off for good. So please keep your fingers crossed for him. We're really wanting that poor boy to not be hypoparathyroid for once.

In a few weeks I will be getting the pap test for cervical cancer, heading back down to Tampa to get this thing out of my forearm, have to schedule the surgery for the intestinal tumor, will also try to toss in a hysterectomy in there for several reasons, and will be getting another draw for my calcitonin levels and intact PTH. I keep hoping they will just stay where they are for once and quit rising. That would be nice wouldn't it?

Monday, August 22, 2005

Sorry that it has been so long in between posts. I've just felt pretty lost and down lately leaving me not wanting to post anything. Plus we've been moving.

As I said, the pain specialist started me on a combined regimen of Zonegran and Cymbalta. After being on the Zonegran for almost a month and a half and the Cymbalta for 2 1/2 weeks I called him and let him know that they were doing nothing for my pain. When I say nothing I do mean nothing. I am in just as much pain now as I was almost three months ago. His only reply was that I hadn't been on the Cymbalta long enough and needed to stay on it. Then he refused to give me anything at all to help with the pain until the Cymbalta supposedly kicks in. :(

At this point, I'm not a good person to be around. After almost three months of nonstop pain I am grouchy, short tempered with Vin, and just don't want to do much of anything because moving hurts so much. So much for the Cymbalta helping the pain much less my mood. Junk!

The only thing that came from that phone call was me ending up crying and them moving my appointment up a week. Needless to say that on September 1st the pain specialist better be ready for me because I'm at the end of my patience meter. I swear if he pushes basically wanting me to have depression one more time I'm firing him and just going to the general practioner to start over on regular pain meds. If this pain is suppose to last 4-6 months then by the time I make my way through them all again the pain should finally be gone.

First it was I had to give the Zonegran time to take effect. That was three weeks almost a month with no results. Then it was well take the Zonegran AND this Cymbalta for the next six weeks. Two and half weeks into that... nothing. You would think I would at least be feeling SOMETHING by that point but no. Continue taking it and see you in 3 weeks he says. Jerk!

So anyway- I'm in pain, still have this "thing" in my forearm because I haven't been able to make it down to Tampa, and I've been feeling pretty sick lately. Another lovely new thing that has come up is the fact that everytime I sweat I itch. If I sweat on my neck it feels like someone has wrapped a piece of fiberglass around my neck. It itches so badly and I break out in a lovely red rash. My old neighbor said she had heard something like that before and it was an allergic reaction to the person's own sweat brought on chemically from a med they were on. I got to thinking and stopped taking the Zonegran for a few days. The first day after I stopped we were moving and I sweat and itched but only about half as badly with the same red rash. The second day I only itched about 1/4th as bad as usual and the rash was alot lighter. By the third day I only had slight itching and no rash or pain. I could be wrong but I do believe it started shortly after I started on the Zonegran. I plan on calling the doctor AGAIN tomorrow and letting them know. If they'll even listen.

The kids had bloodwork done about a week and a half ago. I had full blood counts done on both just to check everything with them. Everything of Sis's came back fine and her thyroid levels are stable so she doesn't have to up her dosage. Her calcium has also continued to stay great. Everything for Big B came back fine except his thyroid levels. His calcium is looking good and we will start backing down on the Calcitrol for him to one daily for a week and then one every other day for two weeks when he will go back in for more bloodwork. If his calcium still looks good then we will stop the Calcitrol and go back in another three weeks to see if his parathyroid is working on it's own. Big B's thyroid meds needed to be increased yet again to 137mg daily. He is now on a higher dose than I am! I'm not sure if it has to do with the fact that he is so active or what. I really do need to research thyroid info so I will know what's going on.

Last Wednesday Big B, Sis, and myself all had an appointment with the dermatologist. I just had Big B's keloids in his neck scar checked and acne/skin checked just to make sure he was looking okay. He was given the option of having a steroid injection to smooth out the scar some which he decided he wanted to try. It looked painful but probably only pinched a little. He was also prescribed some creams for acne.

I had my keloids checked, my moles checked, and my acne as well. With the keloids it was the same option as Big B or I could get some silicone sheeting to wear on my neck 12-18 hours a day. I told him I wasn't too worried about how it looked right now. I just wanted to find out if scar tissue could be causing some of my pain. He said that no he didn't think so and I told him I would check into the injections after the pain thing was taken care of. My moles are noncancerous so that was pretty great. To finally have something on my body be NONcancerous! WOW! lol. I'm going to have some of them removed later on because they rub on my clothing and get caught sometimes. As for the acne, I was given creams as well.

Now, on to Sis. I had her keloids checked in her neck scar, the discolored itchy patch on her back, and the alapecia on her head. She was given the option of injections for the keloids and said no way so that was fine. I wasn't going to make her do anything she didn't want to. The dermatologist said he felt the patch on her back was a form of eczema and prescribed her a medicated tape that we have to apply to her back about once a day. So far it itches even more and drives her nuts. lol. The tender spot on her scalp where she had the alapecia he had to take samples from to check if a fungus might be causing the tenderness. We should get those results back in about a week. So everything was pretty mellow and easy.

That's basically it for now. I'm tired and beaten up from moving. I sweated too much and probably should have upped my steroids but didn't think to. If I feel sick in a few days then I will take care of it. For now I'm just too tired to care. :)

Thursday, July 28, 2005

July 28 Pain Appointment

Just got back from my appointment with the pain doctor a little while ago. The short version is that it most likely is going to be ANOTHER month before I have any relief from the pain. That alone almost sent me into tears but then of course, it continued.

I told him that the Zonegran has done nothing for the pain thus far and all it does is leave me feeling groggy the next morning and with a headache. For twenty days I've had this stuff so you would think it would do something by now. At first he wanted to up the dosage but then he decided instead to put me on an anti-depressant that supposedly has shown to help with nerve pain/damage. So I was put on Cymbalta 30mg for two weeks and then 60mg and come back in 6 weeks. :(

He asked how my moods were lately and I told him honestly that I'm on the verge of tears most days because the pain just takes so much out of me. Of course, then I was given the schpeel about how depression can do this, this, and this and so on and told that the Cymbalta will help that as well.

Why in the hell can doctors NOT get that I do NOT have depression, I don't want depression, and I have no reason to feel I should have depression?! YES, I have been through alot and yes I know other people at this point might have depression but the ONLY thing that is bugging me right now is that I am in pain nonstop!! It's like they just can not comprehend that someone might actually be able to handle life and deal with a crappy hand they might be dealt. I'm sorry I'm not a wimpering ball of depressed muck so they can all have the joy of diagnosing me and putting me on MORE pills.

I have been through some really hard stuff in my life. Stuff that SHOULD have depressed me and tossed me into a pit but I'm stronger than that. BTW- anyone with depression please don't think I'm saying you are weak. I'm just talking about my feelings about myself personally. I'm all for it for other people. LOL. Anyway- I've been through plenty of other crap and never had depression nor did I take meds for it so just because I have cancer and have been through hell the last year I automatically SHOULD have depression and beg for meds?

Please, if I won't let cancer and genetic screw ups take me out do you really think I'm going to let something like depression have me? Sorry it's just not happening and I really wish doctors would accept that. Well I should say Dr L has accepted that because she doesn't even ask anymore. She knows that if I ever think I need something I will ask and I greatly appreciate that.

I do like this new pain doctor don't get me wrong. He is very kind, courteous, and trying to help me out. I just wish he would quit pushing this depression thing on me. Of course, now it's kind of taken care of isn't it thanks to taking the Cymbalta for pain (in combo with the Zonegran)? Oh well, maybe if nothing else it will work on the pain and make me a Stepford Wife for a couple months. LOL

He also explained that the reason he isn't giving me meds that work immediately is because he feels it will take about 4-6 months at least for me to not have problems with pain anymore and he really wants to help me with the long term rather than short term so that is why we are using the Zonegran and Cymbalta. I appreciate that even if it is hard right now while I'm hurting so bad. He also said that the Cymbalta is just to help during this 4-6 months and he in no way expects me to have to continue on it or use it for long term depression or anything. At least he's catching on. ;) I told him that works for me because I'd rather save the anti-depressants for people who actually have depression but again, if it makes me act like a Stepford Wife for a few months then we'll consider it an early Yule gift to Vin and the kids. LOL

Saturday, July 23, 2005

Update From My Endo Appointment

Well first of all, the results of the kids' bloodwork came back last week. The results were pretty good overall. Both of them came back with good calcium levels which is very good and means Big B is hopefully finally doing well with his hypoparathyroidism. Both of their thyroid panel results came back showing them hypothyroid though so we had to raise Sis up to 88mcg of Synthroid and Big B up to 125mcg of Synthroid which by the way is what I'M taking! They were only slightly on the low side with the thyroid levels though so we will redo their bloodwork in about 4 weeks and see how they are doing again.

Last Thursday I found out that I only have one optic nerve in each eye. LOL. After what I had heard about some people with MEN2a having extra optic nerves I had wondered but nope that is at least one thing I am normal on. :) I did however need glasses and got to pick those up yesterday. I can't see worth a darn but the doctor says that is most likely because my eyes spent so long trying to compensate for my bad eyesight that now they are fighting the corrective lenses. So we'll give it some time and go from there. I'm sure I will adjust though.

On Tuesday I went to my appointment with Dr L. It was odd because I was in the room that she first told me the results of my biopsy in. As I sat there waiting for her I just kind of reflected on all that's gone on the last 9 1/2 months. Man, you never realize what a roller coaster ride it's been until you sit and think about it all. I will honestly say it brought tears to my eyes reliving the day she said the words "Your biopsy results came back abnormal for being abnormal" in my head. It's true what they say about your life changing in an instant.

Anyway- she noticed that I've gained weight and said that it is most likely the high dosage of Dexamethasone they had me on after the surgery. She also told me that it's not likely I will lose the weight which honestly almost sent me into a state of instant depression so deep I would have needed some REALLY REALLY good drugs to get back. :( I have gone from weighing 157lbs last September (which looked nice on my 6' tall frame) to now weighing 180lbs and 13lbs of that was gained in between June 2nd and June 11th.

I feel like everything has been taken from me and I know I shouldn't feel that way because I'm still alive, my children are still alive, and things could be so much worse but I can't help but feel cheated and angry. It's just the human side of me I suppose. I will never be considered pretty again as it is thanks to the scar on my neck and the scars on my stomach but now I have to live in this heavy body that isn't me. I feel like I'm trapped inside a bubble and I can't get out. I may end up needing those anti-depressants after all if this weight isn't going anywhere. Isn't it sad that I made it through cancer and everything else but may end up with depression over weight?

Back on track- so she went over the weight thing, we discussed my lab results, she told me that I can exercise just like anyone else and all I have to do is stay out of the heat, and she said I might want to cut back on carbs and up my proteins to help with the weight thing. She also gave me a sheet of paper to give the Emergency Room in case I ever have to go in again with adrenal crisis. It's to help insure we don't have problems like we did the last time. Supposedly all I have to do is give them that piece of paper and they will treat my adrenal insufficiency like they are suppose to. Here's hoping anyway eh?

I told her about the fiasco with the ped endo in Lake City and she said keeping track of the kids until we hopefully move in January shouldn't be a problem. I was so thankful and so relieved that she agreed. She's not a ped endo and doesn't have to do any of this so it's really wonderful of her to be willing to. No more searching for creepy endos for the kids. YAY!!

Now on to some of my lab results. My calcitonin levels pre-surgery were 16,660 (give or take) and as of my last blood draw my levels were 36. This is VERY good. We're hoping it drops more of course but as long as it doesn't start going back up again then we can hold out hope. My calcium level has stayed between 9.0 - 9.6 which is normal and good. It means my parathyroid is working fine as far as that goes. My thyroid panel came back as slightly hyPERthyroid so Dr L dropped my Synthroid from 125 to 112 which means my 14yo son is on a higher dose than I am. I don't get that but okay.

And now for the one bad result- my intact PTH which measures the parathyroid hormone in your system. Pre-surgery this level was around 92 which was elevated but not a HUGE deal. Now it is at 515 which is VERY bad. The doctors in Tampa seem to be scrambling and trying to backpeddle now. They are basically hoping that by removing the adenoma they put into my right forearm my PTH levels will go down to normal. If not then it means they screwed up and we may be looking at parathyroid cancer.

Keep your fingers crossed for me that removing this stupid thing in my arm fixes things because parathyroid cancer means chemo and rad therapy. Not something I'm looking forward to and it would really suck to make it through the other cancers just to end up at this same crossroad anyway.

I was suppose to go down to Tampa on Monday (July 25th) but they decided to schedule the procedure at 4pm which would put us getting back home around 11pm at night. That is just too hard on everyone so I cancelled and will be emailing Dr BC this weekend to see what kind of doctor I need to look for here to remove it and also what doctor I need to see around here for the tumor still left in my intestine. At this point I'm guessing they think it is benign so no reason for me to go back down there to that craphole again.

So that's it- those are the test results, we'll hopefully find someone to get this thing out of my arm, we'll move on to the tumor in my intestine, Synthroid level was dropped, the kids have blood draws in 4 weeks, I have a blood draw in 6 weeks, and we don't have to see her again until December.

Monday, July 11, 2005

Another Ped Endo Bites The Dust

Well I took the kids to meet a new pediatric endocrinologist today only to have it go horribly horribly wrong. :( When I called and set up the appointment in the first place I asked specifically if the doctor had ever had a patient with MEN2a and was informed that he had but it had been awhile. This is part of the reason we had chosen him in the first place.

So the kids and I drove the over an hour to Lake City to see Dr. FT Weber. Our appointment was at 2pm and we arrived at 1pm. Filled out the paperwork and sat there until almost 2:30pm before being called back to a room. Once we got back there we sat there for OVER AN HOUR before the doctor bothered to come in. We started talking and he starts asking me a ton of questions about ME. I figure okay fine he just needs history until he asks me if I'm still menstruating. WTF???? That was strike two (the long long wait was strike one) and I should have listened to my instincts and walked out right then and there but instead stupid me stayed.

He eventually got to asking questions about the kids, babbling about books or some crap to Big B, didn't seem to listen when I told him we still had an hour's drive to get home, and then tells Sis to come over to him. As soon as she is in front of him he lifts up her shirt, tweaks her nipples, pulls the waistband of her pants out, and says "She's in the beginning stages of puberty". I about flipping fell over right then and there!!

I was in such a state of shock and it took me a good five minutes before I gathered myself. By then he was telling Big B to hold onto some beads on a string, measuring his penis, holding his balls, and telling me that Bret was well into puberty. In the meantime I had looked over next to me to see my daughter with tears in her eyes and a look like she had just been violated.

I felt like the worst failure of my life and asked Sis if she was okay. She told me that he had scared her and I told her that we would NOT be coming back again and I was sorry. The doctor didn't seem to hear me and continued to blah blah blah and eventually basically tell me that he didn't think he was qualified to see the kids. I then asked him if he had ever had an MEN2a patient before to which he said he hadn't and no one said he did. I told him that his damn receptionist told me he had and that is the only reason I had brought my children here!!!

So long story short- we will never go back, his manner with children sucks, he left my kids feeling violated, his receptionist is a moron, and that's one more pediatric endocrinologist out the door. I'm also going to report this to our insurance company so they will hopefully take him off the list of providers. I just can't believe he 1- did that to my kids, 2- tried to tell ME that his receptionist didn't say he'd seen an MEN2a patient, and 3- that he can even practice because the man is a freaking pee brain!!

Tomorrow we all have to get bloodwork, on Thursday I finally get to go to the eye doctor, and next Tuesday I see Dr. L again. Hopefully we all show as doing okay on the bloodwork.

Saturday, July 09, 2005

Catching You Up To Now

I figured I would just skip the play by play and just catch you up to the here and now so here it is. I had bloodwork done a few weeks ago but I guess the results didn't make the doctors happy so I had to go back and have it repeated the other day. It will be about a week before we get those results back and then we will go from there. I would love to tell you what some of the results of the first set of tests were because some of them were VERY encouraging but I'll wait until we get these second results instead. I just don't want to get mine or anyone else's hopes up.

Over the past month I have been in ALOT of pain that seems to just get worse with time. Right after the surgery everything in my neck was numb so I didn't feel much. As the nerves have reconnected I've began getting shooting pains and feeling like I had fire in my veins. I've also still had some numbness and my right arm likes to go numb on me. I've tried every pain killer I have (which is quite a few at this point) and none of them have even taken the edge off much less stopped the pain.

I informed Dr. BC of this over a week ago and his answer was that most of his patients feel better not worse and he doesn't know what could be causing this. That was followed by oh it is probably the fact that my calcium dropped from 10.5 to 8.5. That MUST be it. In other words, he doesn't know and doesn't care to know. :(

Finally last week I complained yet again to them about the pain (I can't sleep or function normally) and Dr BC's office set me up with a pain specialist. I went to see him on Thursday morning and was given yet another pain killer to try. The doctor was very nice, very excited to get to meet a MEN2a patient (said he'd been waiting 15 years. LOL), and we talked about homeschooling.

He did a thorough exam and made lots of notes so I was happy with what he was doing. I have another appointment in three weeks and we will see if I've made any progress at that time. He says that all feeling should eventually come back and the pain should go away but in the meantime it's not fair for me to suffer so he will take care of me. That's nice to finally hear from a doctor.

No one has said anything about the fact that I gained 15lbs right after the surgery. It's starting to make me mad that it's not even something they feel is worth bothering with. I personally find that pretty important and plan on being a royal pain in the butt until someone says or does something about it!!

Next week is very busy for us. I finally found the kids a Pediatric Endocrinologist and they have an appointment on Monday, July 11th. His name is Dr Frederick Weber in Lake City, Florida and he has had MEN2a patients in the past. He said it's been a long time but hey, at least he's treated them before and that's better than what we usually get. I'm really hoping this works out because I hate looking for doctors for all of us all the time. Nobody gets how draining that is on me.

On Tuesday, July 12th the kids and I have bloodwork at the lab here. Both kids are getting full thyroid panels done so we can check an make sure they are on the right Synthroid dosage plus we will check their calcium levels to make sure they are doing alright. Sis has been stable the last few times we've checked so hopefully she stays that way. Big B was normal last time and I'm really hoping he is again this time. We're keeping our fingers crossed anyway. I'm getting full thyroid panels and I'm not sure what else since the other lab took blood on Friday. If I hear that my thyroid levels are normal I'm going to scream. I really am because I'm having so many symptoms of hypothyroidism it isn't even funny! I'm so tired of feeling like hell all the time.

The doctors also suspect that I am currently hypocalcemic because I have alot of facial and hand tingling. The pain specialist the other day also said he believes I'm hypocalcemic because of something with my reflexes. I don't remember what he said exactly but something about the way my reflexes responded told him that my calcium levels were low. I guess we'll see right?

Next month we all have a Dermatologist appointment on August 11th. Sis will be getting the spot on her scalp checked to make sure it is alopecia areata and that the hair is growing back alright, she'll be getting the spot on her back checked, and she'll have the keloids on her thyroid scar checked. Big B will be getting his keloids on his thyroid scar checked and that's honestly all he needs looked at right now.

I will be getting the works. LOL. I need to have my scars from both surgeries checked, ALL my moles on my body checked because they have all doubled in size since the first surgery, a skin condition I have checked, my acne checked, and some moles biopsied. Basically I'm a skin wreck. :) I figure if we're going to get looked at we might as well get it all done at once!

I'm also suppose to go back down to Tampa on July 25th to have them remove the whatever it is from my forearm but at this point I really don't want to. If I'm having this much trouble keeping my calcium levels up WITH it in how bad is it going to get when they take it out? So I'm not sure what I'll do at this point but I'm waiting until my test results come back before I make a decision.

I just hope the pain ends soon because it is staring to wear on me. It's so hard hurting nonstop. I can't lift things, or hold things, and if the children touch me wrong I almost burst into tears. I don't want to live my life like this. Hopefully once all the nerves in my neck and shoulder heal then I will be back to normal. If not... well I just don't want to think about that right now.

Monday, June 20, 2005

Back At Home- Post Surgery

I started feeling lousy on the way home from the hospital Monday (June 6th) but chalked it up to a long few days and having to travel home. Once we got here though things got even worse. The nausea and headache started on Monday, by Wednesday I couldn't eat, sleep, or function, and by Friday I knew I was dehydrated and heading towards a poor state. By the time Vin got home from work on Friday I knew I needed to go to the emergency room. So the kids stayed with a friend while he ran me up there and saw me through triage.

This is where my bad luck comes into play yet AGAIN! After triage I was put in the waiting room for TWO HOURS. Finally I was called back, put into a room, told they were going to start an IV and give me some Zofran for the nausea. They then proceeded to pretend I didn't exist for over 45 minutes. It seems it was close to shift change so they decided I could wait that extra time so they wouldn't have to do anything.

Finally the new shift came in, started the IV, told me they were getting the Zofran, and told me they were drawing blood. Another 45 minutes later I asked if they planned on drawing blood and was told they were still waiting for the order of what to draw. I finally get the stupid Zofran which does nothing for my nausea.

Now as soon as I got there I told them everything I have wrong with me, had all my meds with me, had my medicalert bracelet on, and even gave them the number to call Dr BC. I guess they actually DID call him and he told them what tests to run as well as to up my steroid dosage.

Back to the ER- another half hour goes by and they finally come to draw my blood. At this point it is 8:30 and I am completely ignored for the next hour. At 9:30pm a nurse comes in and asks how I'm feeling to which I tell her that I feel worse than when I came in. Then I'm ignored for another hour when another nurse comes in and I tell HER that I am still nauseous. At 10:45pm they give me another shot of Zofran and tell me the doctor will be in soon to talk to me.

Finally at 11:10pm I see the doctor (Dr. Quinones- the same MORON who saw me back in December when I had the kidney blockage) and he informs me that "my tests" came back, everything looks "fine", and I am free to go home. I asked him if everything was fine then why did I feel WORSE than when I got there. He tells me to follow up with my regular doctor, asks me why I don't have one, I explain that it's hard to find one who knows what MEN2a is, and this stupid arsehole proceeds to tell me "Well some of us seem to know what it is right?". ARE YOU KIDDING ME??? This man is a complete moron! TOTAL moron!

So I call Vin to come get me, tell him in the parking lot that I am just stinking fine, and we go home. I then find out that Dr BC told them to up my steriods but they NEVER mentioned that to me ONCE!! So Vin and I decide to double my steroids ourselves and see if that helps. By Saturday afternoon I was feeling much better and by Sunday I was feeling more like myself.

Now mind you for the entire week I hadn't had any pain medication because I thought it was what was making me sick. So I've been in pain nonstop. :(

The following Friday (June 17th), Dr L calls me and says that I was in adrenal crisis and that had Vin and I not had the common sense to up my steroids I would have ended up in a coma and might not have come out. This was lovely news to hear. I made it through cancer and surgeries just to almost clock out because of not enough steroids. UNREAL! The next Monday I filed a report with the hospital which basically means I complained so that they can ignore me and not do anything about it. Dr L told me to never go back to that ER again though and to go to the other hospital from now on. That advice I will definately be taking. That would be at South Georgia Medical Center by the way.

So once we doubled up the steroids for a few days I started feeling better. We also found out that they didn't bother to do a calcitonin test so we still don't know how much I've dropped since the surgery. My thyroid levels supposedly came back fine and so did my calcium at 8.5.

I have to get bloodwork done here in a few days and we will do the calcitonin and anything else we need to then. Hopefully everything is where it's suppose to be and I'm really looking forward to seeing how much the calcitonin has changed.

Sunday, June 12, 2005

Jo's Second Surgery- Thyroidectomy w/Lymph Node Dissection and Parathyroid Reimplantation.

Say that one five times fast! ;)

I'm going to keep the pre-surgery part short so I don't take up too much room. We went down to Tampa on Tuesday night, I had my appointment with Dr. P (the head and neck surgeon) and he told me they would be cutting me more than I thought, I saw Dr. BC's nurse practioner, Heather, and found out she was almost 9 months pregnant (she's so tiny the rotten thing!), had my pre-op appointment, and then spent the day with the family doing things.

The next morning (June 2nd) we arrived at the hospital around 9:30am and got checked in. After that we spent about an hour in the waiting room during which Vin and I agreed that the best thing to do was for him and the children to head home as soon as I went back to get ready for surgery. He wanted to be there during and when I came out of surgery but I just couldn't see him and the children waiting around all day plus having to drive back home that night. The best thing for all of them was to go home where they would be comfortable. So once I was called back Vin went back with me, told me he loved me, and then left.

I spent another 2 hours sitting back there reading magazines and watching doctors and nurses walk back and forth. Dr BC came to talk to me at one point, Dr P didn't, a few nurses prepped me, one gave me some Vercet (and I warned her I would be out before I hit the OR), and off we went. The only scary part was when Dr BC informed me that I could come out of the surgery with a trachiotomy or unable to shrug my shoulders.

I woke up in my room around 8:30pm and the first thing I did was feel my neck to make sure there was no trach. LOL. Having done that I felt my incision and realized that it was MUCH larger than they had said it would be. It was in a U-shape and started under one jaw, went down my neck, across my collarbone, and up the other side to my other jaw. :( I also had two huge drain tubes in my neck that were hurting pretty badly. The next thing I did was test my voice and found much to my delight that I had a voice! YAY! Directly after that I called Vin to let him know I was okay and found out that Aidan started getting a fever on the way home so we had definately made the right decision earlier.

The first night was really rough because I had a HORRIBLE male nurse named Jim who it took SIX HOURS to realize what I meant when I said the pain medication was making me sick. I tried to explain to him that this wasn't my first surgery and I also knew that I wasn't suppose to be in any pain much less have the room spinning, be throwing up, and feel nauseated nonstop!! Finally around 4am he switched me to another pain med and I started feeling better. After that I tried to get some sleep but of course couldn't because the door was left open and no one would answer my call button.

At this point I will just say that I am NOT getting anymore surgeries done at H. Lee Moffitt Cancer Center. I was very disappointed with the nursing staff while I was there. It was horrible! At one point I was choking on a pill (granted not DYING but the thing was stuck) for over 10 minutes and had pushed the call button three times to no avail. Finally my nurse just happened to come into the room and got me a drink to try to wash the monster pill down.

Response time to the call button was awful, nurses wouldn't listen when I said I needed certain meds (even after being told twice they thought my steroids were for inflammation and were nonchalant about giving them to me. I was constantly telling them that I NEEDED the dang things in order to LIVE!), not much chance to sleep because nurses and techs were coming in and out constantly (couldn't be there when you needed them but the minute you tried to sleep they wouldn't go away!), and they just seemed in general clueless. I DID have one or two nurses that were nice and tried and I appreciate that.

I spent my days reading, talking on the phone, listening to the old biddy next door's TV because she had it up full blast, walked a few times, listened to a little music, wrote some, and ate like a horse for two days straight! LOL

Anyway- as far as the surgery went they took out my entire thyroid, supposedly all of the lymph nodes in my neck and shoulders, supposedly two of my parathyroid, and even found a fifth parathyroid away from the others that was hiding behind some lymph nodes. There was also something said about a tumor on that one but I'm not sure what went on with that. Also it seems the tumor was reimplanted into my forearm which I don't understand either.

Dr BC did much better this time in that he came by to check on me each day, took time to talk to me, and tried to make sure I got what I needed. I'm very appreciative that he seemed to take me more seriously this time.

I was in the hospital from the 2nd until the 6th when I was finally allowed to go home because my calcium levels were doing well. They supposedly did a calcitonin test so we should get to find out how much my levels have gone down now that I've had the surgery. I'm anxious to know what they are.

Also, I'm saying supposedly so much because no one has completely told me for sure what was done yet. I hope to get some answers soon though because I'd really like to know what went on with my body. :( MUCH more happened after I left the hospital but I'll save that for the next post.

Friday, May 27, 2005

Just a quick update...

Well they moved my appointment with the head and neck surgeon and my pre-op appointment to June 1st so we don't have to go down two days early after all. I KNOW it's better because we will save some money but I wouldn't be honest if I didn't say I had been looking forward to us getting to spend a whole day just being together. Oh well, not much to do about it.

My CT scan results came back and I'm a little miffed. They said there is no sign of infection, no kidney stones, and something else. Well DUH, you think? We were looking for absess or internal bleeding. I'm sure those came back negative as well but still, how about a decent answer now and then. STILL know nothing about the possibility of scarring though. So at this point I guess I'm feeling flank pain and liver pain for no reason. Must be totally making that up. I guess I enjoy hurting and those wonderful pain killers they keep giving me that DO NOTHING!!! *eyeroll*

The tumor in my liver is excessive tissue. DUHHHHHHH, we've already said that too TWICE now. Not much was said about my neck except that I had a few small nodules on the right side and some larger ones on the left. Again, a little miffed because the report made it sound like they were no big deal. Guess I'm just not in the mood to have CANCER trivialized you know? I also had some fluid in my pelvis and a cyst on one of my ovaries. WHO CARES?!

The bone scan came back clear so no bone mets at this point. So I guess that would mean I have no reason to be in constant pain so bad I can't sleep and I want to rip my arms and legs off then eh? Again, must be just me wanting those lovely pain meds that don't do jack for me. :(

I don't know where we go from here to be honest. I'm gladly nothing scary or new showed up but at the same time I'm tired of hurting all the time and would really like to know what's going on. I have a feeling that I will just get blown off from now on. *sigh*

Kids had a blood draw today so we will find out probably when I get back from my surgery how their calcium levels are doing. Big B is ALMOST at the level he's suppose to be at. Just a little bit more and he will be out of the woods on that. They are getting use to having blood taken. Even Sis which makes me proud. I just wish they didn't have to go through this several times a year for the rest of their lives. :( That part REALLY sucks.

So Tuesday I pick up my copies of my records from Dr. L's office and then we are off to Tampa for the surgery. The soonest I will get to come home will be next Sunday and I'm really hoping they let me out then. I'm going to miss the kids so much and don't want to be away any longer than I absolutely have to.

Monday, May 23, 2005

My neck surgery is scheduled for June week. We have to be there on May 31st because I have pre-op and an appointment with the head and neck surgeon that day in Tampa. I have two surgeons for this surgery. One will be the same one that did my adrenalectomy and he will do the thyroidectomy part of the surgery and then the head and neck surgeon will remove every single lymph node he can find in my neck, any cancerous cells, and scrape...yes SCRAPE everything in my throat to get rid of as much cancer as we can.

The surgery itself will take around 8 hours from start to finish and I found out how they will be cutting me. THAT is the hard part to swallow. They will be cutting me about a finger breadths length above my collarbone from one side of my neck to the other. It's the only choice. So no small little scar that you won't see for me. I guess it's better than the great big upside down "T" that they use to do.

I'll be honest... I'm sitting here in tears right now. I already feel so self conscious because of my height, flat chest, and recent weight gain. Now people will stare at me and this huge ugly scar on my neck. Lucky me has a major problem with keloids too so it won't get better over time. It will ALWAYS be a big red ugly scar. I'm trying to tell myself that it's a small price to pay to be rid of this huge lump in my throat and this cancer from a part of my body but the woman in me can't help but be vain.

Dr BC said I won't be getting out of the hospital any earlier than Sunday. For the first two days I won't be able to lift my head at all and I will be on ALOT of pain meds. He said that the adrenalectomy was a cakewalk compared to this. That is NOT what I wanted to hear. At least he was honest though. He told me that it will feel like someone gave me razor burn on the inside of my throat because they will be scraping every vein, muscle, tendon,...well you get the drift. My arm will of course hurt because they are taking the only parathyroid they will save and reimplanting it into my forearm. I'm going to be all cut up and bruised up.

*sigh* No more modeling with Cindy Crawford for me. I'll have to just cancel that photo shoot in the Bahamas now. Sorry, just trying to make myself laugh. Not working, just had to blow my nose.

Anyway- after the surgery I will be on three meds on top of the two I'm already on. I will be on a Vitamin D pill called Rocalcitrol and calcium pills for about two months until the parathyroid in my forearm kicks in. I will be on the thyroid hormone replacement for the rest of my life obviously. So long term I will be on three meds (unless by some miracle that little piece of my adrenal gland kicks in instead of becoming cancerous AGAIN) and short term I will be on an extra two with calcium possibly being long term as well.

Vin and the kids are going down with me Tuesday and staying until my surgery on Thursday (thanks to Sis's very wonderful grandpa sending money to help out... I love that man he has helped me out sooooo much over the years) and then they will probably come home until Sunday when they will come back for me and I WILL be ready to go home on Sunday! Come hail or high water I'm going home on Sunday.

We'll stay at the same hotel we always stay at because with the cancer patient discount through Moffitt it's the cheapest you can find for a decent place plus part of their discount includes free breakfast coupons and that saves money as well. On Wednesday we will probably put the Aquarium pass Vin's mom bought us to use and also the museum pass as well that way we have something to do and again... it saves money.

I told Vin that once I'm in surgery on Thursday he needs to just take the kids to do stuff and check in later in the day. There is no sense in him and three kids hanging around a hospital waiting room for 8 hours. I won't even know they are there and it's not fair to the kids to have to deal with that. I'm sure going to miss them so much though once they head for home. I always miss Lil Man the most because he's the only one that still depends on me and I'm so use to cuddling with him at night. The oldest two are big enough to understand and talk to me on the phone and know I love them. I hate this crap so much.

After this surgery we will be going after the tumor in my small intestine. The lesions in my liver thus far have proven to be just excessive tissue (fibrosis) so we don't have to touch the liver at all. YAY for that one! But we can't figure out what the small intestine one is so we will have to tackle that little bugger next. Think they will throw in a hysterectomy just for good measure when they go in after the tumor? *smirk* I think I've earned a two for one deal at this point.

That's all I can think of right now and if you read all that then thank you. I appreciate everyone who reads my posts, wears our bracelets, and checks this blog. It means the world to me.

And just so you know... I will be taking my wonderful quilt that some of you lovely ladies made for me and holding onto it for dear life after the surgery. *kiss*

Saturday, May 21, 2005

CT Scan

The night before the scan, I had to drink one of the barium shakes and about half an hour later the reaction I had the first time to the stuff started again. I started feeling nauseated followed by diarrhea and then mild vomiting. The last two only lasted a few hours but the nausea was with me up until that morning when I had to drink the second shake. Within half an hour of drinking that one I had the same response but had to go to get the CT scan so just made due.

When I got there I told them about the reaction I had and then went back for the scan. The radiologist had them give me an injection of Benedryl that was SUPPOSE to practically knock me out in hopes of avoiding the same reactions as last time. They inserted the IV contrast and started injecting it into me and did the scan. The nice thing this time was that I didn't have burning pain so bad I cried from the contrast like last time.

The Benedryl did nothing and by the time I got back home I was starting to feel dizzy, even more nauseous, stomach cramps were starting again, diarrhea, and my chest was tightening up. In other words, ALL the same problems I had with the first scan back in October. I spent the rest of the day just feeling horrible and having to lay around while Sis helped me with Lil Man. :( Towards the afternoon I was having some difficulty breathing along with the chest tightness and had to force alot of deep breaths in. Not enough to scare me but enough to be irritating.

So my body obviously can't tolerate the barium sulfate AND/OR the iv contrast so they will not be using those on me again in the future. *sigh* Leave it to me to be difficult eh? I'm going to have to have Dr. L write up something for me to keep with my copies of my medical records so that when I have my next scan I can just hand it to them and they will take me seriously about not using the barium and contrast.

The scan results should be in on Monday not that I'm too worried about it. I already know what's going on in my neck so I could care less about that one and I'm sure there is most likely no absess on my kidneys or anything either but I'm glad we are going the "better safe than sorry" route just the same.

Tuesday I have my bone scan and I'm a little nervous about that one. They have to inject me with something AGAIN so I'm not crazy about that but I guess I'm also a little scared to see if there are any bone mets at this point. If there aren't any then we will continue trying to find out what is causing all my pain and why it's getting worse.

Thursday, May 19, 2005

Somewhat MEN2a Related...

I'm adding this in because it's a medical happening in our lives and is also because of the recent surgeries etc.

Yesterday Sis came up to me and said "Mom, what is this on my head?". When I went to look there was a two inch long BALD SPOT on the top of her head!!! It looks like someone took a razor to her head a few weeks ago and shaved a spot out and now there's stubble! It's under a layer of hair so if you look at her you can't see it and have to actually move the hair to the side but did I miss my kid getting a bald spot? I feel like such a jerk of a mom right now just because...well because I'm mom and I should catch these things! :(

Anyway- I freaked out and called the endocrinologist asking if this was from the thyroid meds and she said "no" and that it sounded like alopecia areata from the trauma and stress of the surgery and since. Of course, I started googling and it says one cause of alopecia areata is an autoimmune disorder so I freaked even more. As soon as I got off the phone with Dr. L I called the kids' general practioner and made an appointment to get this checked out.

Poor kid... first her voice (which IS coming back now but you should here the poor thing laugh! OY VAY!! It's awful), then she started having headaches and turning pale that we have to test reasons for, and now a bald spot on her head!

Took Sis to the doctor this morning and she THINKS it is alopacia areata (basically just means hair loss.) caused by stress and trauma. In other words, Sis's body's way of dealing with the surgery, recovery, and all that went with it. Poor girl. Luckily it is growing back so we don't have to worry about it being anything permanent. Poor kid is just going to have some short hairs on the top of her head for awhile.

I asked her about Sis's tendency to go pale and get headaches and it looks like that bloodwork for that has been put off until next month when Sis goes back in. I'm not willing to wait the extra time and will be having my endo order a full blood panel on her here in two weeks when they check the kids' calcium, PTH, and TSH.

I'm quickly becoming a doctor's worst nightmare and they are not appreciating me very much. LOL. Well my endo is use to me but other doctors don't like it when I walk in and ask them questions I guess I'm not suppose to even know to ask, already know about the diagnosis (I had read about the alopacia as soon as my endo mentioned it), and tell them what they should or might want to order.

Excuse me but ummmmm as for the general practioner... they have NEVER had a MEN2a patient. They've read about it and know generally about it but that is it. So yes, I DO know more than them and will full well tell them as much as well as what to do. My endo at least admits I know more than her and has no problem listening to what I suggest and actually doing what I think we should do. She knows I do my research and know all about everything that goes on with me and my kids. Now if I can just train everyone else we'd be fine.

Anyway- so we have been referred to a dermatologist for a second opinion "just in case" and we're also going to get this odd spot on Sis's back looked at as well while we're there. So she's okay and this will hopefully only be a onetime thing. I'm very much relieved and glad it wasn't something more serious.

I picked up my Barium Sulfate today to drink (liquid chalk with just a hint of metal... YUM YUM). I think by tomorrow morning just before 8:45am I will come as close to a panic attack as I've ever been in my life. Getting a CT scan scares the bejesu out of me because of the last one I had, how sick I got, the pain from the IV, and the pain from the IV backing up. sad.gif I have been almost in tears all afternoon how pathetic is that???

At this point there is no medicine or anything that will help Sis's hair grow back so we just wait and let nature take it's course. We just wait and see what the dermatologist says next and go from there.

Wednesday, May 18, 2005

Jo's Chat With The Endo

So I didn't really have an appointment with my endo but she discussed some stuff with me. I told her the Cortef is working great and I am feeling ALOT better to which she was glad and said we'd just keep me on that. I told her I'm taking 25mg instead of 30mg and hope to work my way lower for obvious reasons. She told me just to let her know before I do it so we can make sure I'm not running any risk of adrenal crisis. Then we talked about the fact that my pain has gotten worse and I told her that I found out from other medullary patients that sometimes even a few years before bone mets show up they had the same kind of pain.

I also told her that Dr. BC seems to think it's because of the hyperparathyroidism and as soon as that is taken care of it will be all gone. Dr. L just rolled her eyes with me because we both know that my calcium levels are fine and so is everything else so there is no reason why the hyperparathyroidism would be causing me pain. I think we both have come to the conclusion that he's not the surgeon for me. *sigh* Anyway- she changed my pain meds to Neurontin once a day at bedtime in hopes that would help me. We're also going to do a bone scan to see if we can see anything as far as tumors go on the bones yet. We're hoping not but better safe than sorry.

After that I told her that the other surgeon in Tampa wants me to get a CT scan of my throat even though I already had one in October so I told her just to add the abdominal scan we were going to do as well. So we'll do that one to make sure that I don't have an abcess or internal bleeding around my liver and kidneys. If it comes back negative for both of those then we will know that it's scar tissue and just make sure I have good pain meds until it finally gets better.

The CT scan WITH Barium shakes and IV contrast will be on Friday at 8:45am and the Bone Scan will be on Monday, the 24th at 9:30am. I'm so nervous about the CT scan after how horrible the last one went. Supposedly the last one was so bad because of the pheos but that doesn't make the anxiety any less. As for the bone scan, I've never had one so I don't even know what to expect with that.

We also took some blood to run some tests. Basic tests are things like TSH since we haven't done one since September, PTH, and so on. The not basic would be the blood tests for rheumatoid arthritis. We're just checking because of the pain I have but if they come back positive then I will have to add yet ANOTHER doctor to my entourage and start seeing them as well as being on even MORE meds. NOT my idea of fun!

Sad thing is I don't know whether to hope it's rheumatoid arthritis or bone mets causing the pain. Either one sucks and no matter what I lose you know? Damned if I do and damned if I don't! LOL.

So now we just wait and see what happens. I will follow up with her after my surgery and go from there as far as my regular stuff goes.

Oh and did I mention I might talk to another surgeon because I'm not feeling comfortable with Dr. BC? If not...yeah I am. He still hasn't answered my email with my surgery questions in it and I'm not in the mood to be part of some "berry picking" experiment on his part. I'm actually calling the other surgeon tomorrow and seeing when I can get in to see him. I've got nothing to lose at this point and everything to gain so it can't hurt.

Tuesday, May 17, 2005

Big B and Sis- Endocrinologist Appointment

The bloodwork came back from the kids' tests and Sis can stop taking the Tums now because her calcium levels are fine. I brought up the fact that she gets headaches and turns pale and Dr. L said it doesn't sound like anything having to do with the meds so we're going to set up a full blood panel screen with the kids' regular doctor to see if anything is going on.

We also found out that Sis is developing keloids in her throat scar. :( Poor kid inherited yet another thing from her mother. I'm just really starting to feel like I suck thanks to all this you know? Anyway- not much we can do about it right now but after the one year mark I think I will take her to a dermatologist and see if we can do anything about it. Her TSH and PTH levels came back fine so the level of Levoxyl we have her on seems to be doing it's job.

Big B has been put back on the Calcitrol because his calcium levels are still a little low. ALMOST where we need them but just not yet. The nice thing is he is only on the Calcitrol every other day instead of everyday like he was before. He also has to continue with the three Tums daily. His TSH came back fine meaning he's on the right level for his body of Levoxyl as well. His scar is healing fine and no signs of keloids on him. It seems one of the kids got the easier road on this and one of them got the hard road. *sigh* I wish they both could have just had as easy a time as possible considering all they have to go through.

We will be doing bloodwork on them again in 2 weeks and go from there on whether or not to keep Bret on the Calcitrol.

I also talked to Dr. L about the whole parathyroid thing (removed or not removed) and she agrees that if there was parathyroid tissue present when the pathologist did his stuff then more than likely it was parathyroids themselves. I am NOT happy about this to say the least. I'm going to email Dr. G again and tell him what I've found out. If he denies it again then we will look into what our options are as far as scans or whatever to determine how many parathyroid the children have left. I don't mind if they were removed because considering the history and everything I understand why parathyroid would be removed. What makes me mad is if they were removed and Dr. Gow is lying to me about removing them. THAT is where I have a problem and that is why I want to know the truth for sure.

And it looks like this post is long enough already so I think I will just post a new one about me tomorrow. LOL. Don't want to overload anyone who still reads this thing. ;)

Thursday, May 12, 2005

Okay Now ME

Well let's see, I was suppose to have my thyroidectomy on May 10th but after much thought I rescheduled it. The reason why is because it has seemed like since the adrenalectomy I have felt worse and worse as time passes. Nothing I did would make it better and I was getting no help from the doctors. I finally emailed Dr. BC about my concerns with feeling like this and adding another lifelong med. He mentioned that no endocrinologist he knew prescribed Prednisone and that most he knows use Dexamethasone. Well that got me thinking along with some stuff I found online from other patients. So I called Dr. L and informed her I wanted a different steriod. I expected a huge fight but nope, they called it right in. So for the past week or so I've been on Cortef and I honestly feel soooooooo much better! It is unreal the difference and I'm so happy!

I also have been having flank pain on both sides since the adrenalectomy and it has seemed to get worse over the months. When I had the liver biopsy done in March suddenly I had shooting liver pains as well. We tested me for everything we could think of and everything came back fine. It has been quite baffling. Finally a couple weeks ago there was a discussion on the Pheo Support board that I'm on and long story short I found out that two other women who have had adrenalectomies have had the same flank pain. Finally one woman's doctor found out it was scar tissue. Of course, a lightbulb went off for me. I naturally develop extra scar tissue anyway so it makes sense that I would in this instance as well. We are now in the process of checking into it and I honestly think this is the problem.

As for the liver pain, another woman said that her doctor warned her she would have it for a few months after the liver biopsy. Of course, MY surgeon never bothered to tell me this. Gee, thanks AGAIN. *sigh* When I asked Dr BC in email he said that he had never heard of pain getting worse with the adrenalectomy and oh yeah, you could have some pain after a liver biopsy. I'm soooooo not feeling him right now. :(

My new surgery date MIGHT be on June 2nd but I'm not sure. One scheduler called last night and said we would aim for that but then another one called today and said Dr BC only does surgery on Tuesday so that couldn't be. So I'm waiting for SOMEONE to call me back. If it sticks with the 2nd though then we will go down the 1st, have the surgery the 2nd, and I might actually get to be home by that Sunday. Okay so I WILL be home by that Sunday.

This will be my last surgery with Dr BC. I have decided I just really can't handle not trusting my doctors anymore. Once we find out if Vin's contract is extended then I will be searching for a new endocrinologist and surgeon. Dr L has been passing off what I've been telling her as far as how I was feeling. It sucks knowing that had I not done my "homework" I would still be feeling like hell on the Prednisone. I'm also tired of getting " the test results came back FINE" as an answer. Dr BC is the one who told me my chances of the medullary cancer having NOT spread by now was slim to none. Or I should say he confirmed it when I said slim to none. NOW the other day on the phone he is telling me that we need to hurry up and get this surgery done because we can contain the cancer if we take out the thyroid and I will be cured.

Blogspot should have eyerolling smilies...really. I am so disgusted with him right now. I'm not stupid and I definately do not appreciate being treated like I am. I know with my high calcitonin and the amount of time that has passed that there's not much chance of being cured. I've accepted that so don't screw with me. Be straight with me. Don't lie to me. Don't shoot rainbows up my butt. And do your job!! That's all I ask from these doctors yet it's just not happening.

So I'll be getting treatment elsewhere after this. Hopefully next time I will find doctors I can rely on and trust.

What else? I'm not able to sleep much. I'm really hating that because it would be nice to get some sleep every so often. I'm afraid I'm going to need a sleep aid because it's just not getting any better no matter what I do. I was given Ambien a few months back but I just don't trust that stuff and won't use it. The "bone pain" is getting worse and has been for almost 2 months now. Ultracet doesn't touch it, Loratab doesn't touch it, Percocet didn't touch it... I'm at a loss. I plan on bringing up the idea of a TENS unit next week during my endo appointment. I just would really like to keep away from addictive pain meds for as long as I can.

I'm still holding up the best I can. It's starting to get hard some days and overwelming most others but with kids you have no choice. I'm the example that they will base how they handle the rest of their lives with this on. I have failed them in so many ways that I just can't fail them in this. It's not an option as far as I'm concerned.