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.

Tuesday, May 10, 2005

Well I figured it was time for an update. I guess I’ve been putting it off because it all gets a little overwhelming sometimes. Let’s see- I’ll start with the kids…

Big B- is still on the Calcitrol. His last few blood tests have come back low on the calcium. The last one DID show that his parathyroid(s) is/are working so that’s something at least. He’s doing fine on the thyroid meds so far (88mg Levoxyl daily) and doesn’t seem to be having any problems showing that we need to up his dosage. He’s also now taking three Tums a day for calcium plus I’m making sure he gets around 1500mg total per day of calcium through the Tums, milk, cheese, calcium fortified orange juice, and the like. He had more blood drawn today so hopefully we will get those results back in the next day or two and they will be good.

His scar is healing and he seems to be okay with it. He doesn’t act embarrassed and has even taken a sense of humor about it telling some people at school (once he got tired of repeating what he had done over and over) that he got cut protecting his family in Atlanta when some guy tried to steal my purse. LMAO.

Sis- her calcium levels seem to be doing okay and she’s taking two Tums per day plus I make sure she gets around 1300mg of calcium total each day. She had bloodwork done today as well so I’m hoping her’s continues to come back normal/okay. She seems to be doing okay on the thyroid meds (50mg Levoxyl daily) but for the past week or two she seems to be getting these headaches that make her go pale for awhile. I’m not sure what is causing them. Sometimes lying down helps and other times it helps if I have her eat something. Of course, I can’t get any answers from anyone who is SUPPOSE to be a doctor. I’m so sick of that crap. Really I am.

Her scar is healing except she says it hurts/pulls sometimes on the left corner. I checked it and it feels like some scar tissue there that might just be sore. Hopefully time will take care of it but it too will be getting checked. Her voice is coming back. She doesn’t sound too bad now except for when she laughs. THAT is just horrible the poor kid. Vin says she sounds like Fran Dressar when she laughs but no… it’s like Fran with a sore throat. :( I’m hoping in time she gets a normal laugh back as well.

Both children have an appointment with Dr. L on May 17th and I will be getting EVERYTHING checked at that time. I have decided to have the children tested to find out how many parathyroid they each truly have. I have talked to two more doctors since Dr. G’s email and both have told me that with as small as a child’s parathyroid is that they have a hard time understanding how you could just scrape off some of the tissue. In other words, they think he’s full of it. I’ve reviewed the medical records I have and in the pathology reports they say the samples are parathyroids NOT tissues. In the dictation of the surgery it says the left upper and right upper parathyroid of each child was left intact. Well… I want to know what happened to the LOWER parathyroids. I figure an ultrasound, CT scan, or MRI will show us what exactly is there.

I hope for Dr. G’s sake my children still have ALL their parathyroid because I have saved EVERYTHING and will be consulting a lawyer if not. I’m not big on suing but at this point in our lives I’m not willing to walk away when it comes to my children.

At the appointment with Dr L I’m also going to address the headaches that Sis has, the paleness, get copies of all their test results because I’m tired of hearing “the results came back FINE” whenever I ask for test results, arrange the test for the kids to find out about the parathyroids, and whatever else I need to do.

Tomorrow I will update on myself. I just wanted to make sure I got down everything on the children while I could still remember it.