Friday, February 25, 2005

I just want to start out by asking if anyone who reads this could please say some thoughts and prayers for one of my best friends, Emily. Today was the two year anniversary of when her sweet baby quit breathing and her whole world changed. Kierra spent the next 8 months struggling for life and basically living in hospitals until she finally lost her battle only days before her first birthday. It was a very hard day for Em and then she got more bad news. I don't feel it's my right to share in on the internet but suffice to say she has experienced more loss than someone her age ever should and my heart just aches for her. She is such a wonderful person and deserves so much good in her life. It sucks that she keeps getting the crap end of the stick. :( Thank you.

So I went to get my labwork done today and for some reason they want me to come back NEXT week to be tested for diabetes. I have no clue WHY but it would be nice if they would just do all the testing I need at once so I don't have to keep going back. Dr Lawrence told me on the phone that she wanted me to have the additional tests today but her nurse told the lab today no so oh well. They did draw for the replacement calcitonin test and metanephrine test so those should be back sometime next week as well. I found out the lab here isn't the one screwing up my bloodwork. The sample is frozen like it's suppose to be when the courier from Quest Labs picks it up and it thaws somehow by the time Quest gets it so it is THEIR fault. The supervisor of the lab here is filing a complaint because as I said, this is like the second or third time for me and they did this once to my kids too. If it ever happens again I'm requesting that NONE of my labwork goes to Quest anymore.

We FINALLY have an appointment with a surgeon for the kids! Dr L referred us to a surgeon that operated on her son and is comfortable doing thyroidectomies in children. It is a doctor in Atlanta on March 1st named Dr. KG so hopefully this gives us enough time to plan their surgeries over Spring Break. The surgeon here in town said he wasn't comfortable doing their surgeries (then promptly sent me $149 bill from my appointment 5 months ago. Weiner!) so this is who we were referred to. I hope this guy is competant because I think if I meet one more stupid doctor I'm going to cry. Seriously. I just can't take the stupidity anymore.

Speaking of stupidity- I went to the pediatrician that doctor in Tallahassee referred me to and he's a weiner too!! Dr. G is so pro-vax that he refused to take my youngest child as a patient at all because he isn't vaxed. I was so pissed off over that but I kept my cool. I asked when I first went in what his views on vaxing were and the girl called back to the back and asked. You could hear him on the phone basically laughing at me and calling me a nut. I felt like grabbing the phone from the secretaries hand and ripping into him. He said that HE has FULL confidence in the AMA, FDA, and CDC and believes EVERY child should be vaccinated and it is irresponsible not to.

I wanted to cancel ALL the kids out after that but I kept my cool and still kept the appointments I made for the oldest two because I want someone who at least knows what men2a is to care for them.

Of course, I came home and promptly started calling every pediatrician I could find on our insurance within 50 miles. :) I found one about 20 miles from here who knows what men2a is (hasn't had any ped men2a patients but knows what it is and is very interested in learning more) and is pro-vax but is totally cool with our choice on Lil Man. He said I would just have to sign a waiver saying I take responsibility and understand the consequences of not vaxing. I told him I am very educated on vaxing and vaccinations and I'm very comfortable with my decision. He (it's a husband and wife practice) was really cool about it and sounded excited to get to be the kids' doctor...all THREE kids' doctor. So I set up and appointment with them and will call bright and early on Monday morning to tell Dr. G to stick it! Wanker!

So we now have a new pediatrician set up and a surgeon for the kids. All that is left is a pediatric endocrinologist and they are good to go. I can finally breathe a LITTLE easier on that at least.

After taking 15mg of my meds for two days I'm feeling MUCH better. I also took some of the new pain pills last night and it took away the pain and that was it. I wasn't left drowsy, dizzy, or impaired in any way. Definately what I like to have! The doctor wants me to stay on 10mg of the steriods for a few days and then taper back down to 5mg. If I start feeling like crap again then we'll know where I'm suppose to stay dosage wise and can adjust. I just hope everything gets adjusted before I leave for Tampa so I'm not dealing with feeling like crap on top of everything else. I just want to feel normal again so I can at least pretend everything is okay. As long as I'm not "feeling" sick then I can pretend I don't have cancer, men2a, or any of this other crap. I can just stay in my bubble you know?

That's all for this update. Look at my normal blog for everything else going on with the heathens and us. ;)

Wednesday, February 23, 2005

Today was a bad day filled with just all kinds of bad news. :(

I went to my appointment with Dr. L today and of course we went over my test results. First let me say that the lab screwed up two of my tests AGAIN!!! Even though I told them to make sure they didn't screw up. I am so mad and disgusted right now but at the same time the one time I tried to go to another lab it was disgusting and they had even less of a clue what they were doing. How can they keep screwing up the same stinking test over and over? This is the second or third time they have screwed up my calcitonin test and then of course they screwed up the kids' too. :(

Anyway- she told me that the stim test (adrenal function) of course came back flat but that the aldosterone got higher with each blood draw meaning that we could have a small smidge of hope. She's going to retest later after we wean me down on the steriods some more. We're not holding our breath but we're not completely giving up either.

My calcium came back slightly elevated which it has been the whole time. It just means I have hyperparathyroidism which we already knew of course. Tests showed that I'm doing okay as far as the Florinef goes and we can start cutting that back to 0.5mg a day instead of 1mg.

More bad news was that Dr. R says he won't do the kids' surgeries because he doesn't feel comfortable doing them. So we are being referred to Atlanta which most likely means the kids won't get to have their surgeries by Spring Break and they will have to miss more school. :( They are both upset because they wanted to stay close to home but I did the best I could. The "joys" of living in a stupid small sucky Southern town that is 3 hours from everywhere! Ugh, I hate this place!

On top of that I found out that yes, I was heading towards and adrenal crisis. She even noticed I didn't look too well when she first came in. Dr L told me to triple my Prednisone today, drop it down some tomorrow, and then try going back to 10mg a day the next day and see how I feel. If I feel bad then call her. She says that all the symptoms I told her about are signs that my steriod dose is too low. Darnit! Once I came home and took more of the Prednisone I started feeling better and the headache is just a dull ache tonight which is a nice change.

Dr. L said that I tested negative for pheos which means we very likely got them with the adrenalectomy and I also tested negative for carcinoid which leaves us back to wondering what the heck is in my liver and small intestine. Actually it just puts us back at figuring that it's most likely the medullary cancer there and I'm pretty much screwed. Again I was stupid and let myself hope that the medullary cancer hadn't spread and maybe this would all go away. I don't know why I do that because it just makes it even harder when I fall.

She also called me later on and told me that she was going over the list of symptoms I gave her and noticed excessive thirst, frequent urination, and flank pain. We are now having to test me for stinking DIABETES on top of everything else. This just plain sucks so bad. :( I'm really just about ready to have a breakdown I swear. Okay so I seem to be one of those people who is it impossible for to have a breakdown but dangit I want one and I've earned one!

I have to go to the lab AGAIN tomorrow to have more blood drawn and give urine so I can get the calcitonin test again, seratonin again, test for diabetes, and a few other things she wants to check. I also got a new prescription for my Florinef and some pain killers FINALLY!!! I told her I didn't want Vicodin again because all it does is worsen the headaches and that I had used 1/2 a Loratab before and it took the edge off and I was okay with that. I haven't been pain free in almost a year but I can handle it if the edge is off some. She told me there is another drug that is nonaddictive and asked if I wanted to try that. I told her that would be great because getting hooked on pain killers is not my idea of fun. So starting tomorrow night hopefully I won't be in pain anymore especially at night and can sleep in peace.

So tomorrow is labwork and pick up meds. In two weeks is the Octreotide scan and liver biopsy. Hopefully somewhere in there is an appointment with a surgeon for the kids. I'm so tired of setbacks where they are concerned.

I really hope I don't have diabetes. If I do it is most likely secondary diabetes mellitus which is usually caused by medications or medical conditions. I just can't believe this. After all the other crap I have to go through this might be thrown in there too.

I must have REALLY sucked in one of my past lives! Ugh

Tuesday, February 22, 2005

Had to reschedule the Octreotide scan and liver biopsy for March 8th, 9th, and 10th. The main reason is because we just dumped almost $3000 into the van and the black car THINKING they would both be reliable. The van got a new transmission and a few other parts and promptly decided yesterday to start burning oil and the brakes started messing up. So we most likely need either a new head gasket or a whole new motor for the van. Vinny redid the engine in the black Honda and the stupid thing is still leaking oil so he has to pull the tranny again and fix it AGAIN. :( So no way to get to Tampa today for the scans and such tomorrow.

I think rescheduling was a good idea anyway because alot is going on here that needs taken care of. There is really no sense in me getting treatment for the cancer and stuff if I'm just coming back to a toxic environment. Hopefully things can be straightened out once and for all. Actually things WILL be straightened out once and for all no matter what.

I figured out why I've felt like hell the last few weeks. I've been stressed to the gills and "stuff" and haven't been compensating my meds to deal with it. So I've basically been slowly wearing my own system down to the point where if I had kept going I probably could have easily ended in an adrenal crisis. This morning I doubled the Prednisone and actually feel a little better today. Not sure if it's had time to get into my system or not but maybe just mentally it's helping knowing I took it you know. ;) I'll continue to double it for a few days and then go back to regular doses like I'm suppose to be. I'm suppose to triple the dose but the thought of that just freaks me out. Of course, if doubling doesn't work then of course I will triple. Damn my adrenal gland for not working!

I have to go by Dr. L's office here in awhile and get copies of my test results as well as have them call me in another prescription for the Florinef because I have about 6 days worth left on that and no refills. After that I might swing by the pediatrician that I want for the kids and give them copies of the kids' records so we can start things there as well.

I made an appointment with Dr. R (the surgeon here in town) yesterday for March 2nd for the kids. Hopefully he will do their thyroidectomies because the kids really want to stay here and not have to go somewhere else. I even told them that other hospitals have pediatric units with nice walls and other kids. My oldest said "Mom, I really don't care what color the walls are and we're only going to be there for a day so it's not like I care about making a surgery buddy or something". LOL. I'll probably pull out that Gameboy Advance I got at Toys R Us (I just have to brag- I got it for $7.49 on sale!!! They only had one left and that stinks but I couldn't have afforded one otherwise so I'm happy) and let the kids play with that to pass the time while they are in the hospital. They can just take turns with it. :)

So for now I'm just trying to keep from getting sick and trying to start feeling better. Also trying to make things calm in my household even though they haven't been in 5 years so no clue WHY I think they should be now. No appointments this week so I plan on just hanging out with the little guy, doing some knitting, doing some cleaning, and maybe getting in some Tai Chi and sewing.

Symptoms for this week just to keep track- headache (three weeks nonstop now), nausea, vomiting when the headache and nausea hit at the same time, no appetite (that is so odd from a week ago when I was eating everything in site), bone/muscle pain, abdominal cramping, acid reflux, little bit of dizzyness, and the last two days I've had fatigue.

Friday, February 18, 2005

SOME Test Results And Scan Schedule For Next Week

Well finally heard back from Dr. L's office this afternoon. The only test results that came back so far are the cortisol stim test (the adrenal function test) and my calcium levels. So as far as those go there is bad news and then there is worse news. :( My calcium levels are at 10.9 which isn't horribly high and honestly it's just past normal range but it is going up from when it was done in October meaning the hyperparathyroidism is getting worse. The stim test results showed that as of right now there is no adrenal function. The adrenal sparing surgery was a complete waste. :( I could just crawl into a ball and cry right now. She said that we will test it again later just in case it's just being lazy right now but not to hold my breath. So I've risked getting pheochromocytomas again later on and having to have that little piece of adrenal gland removed for nothing. That is such a hard hit right now.

My calcitonin test results and seratonin results weren't back yet but I hope they are by Tuesday because I have to be in Tampa on Wednesday. Here is my schedule for that-

Wednesday, February 23rd- 7:45am have blood drawn, 8:00am drink a bottle of laxative and get injection for Octreotide dye, Noon have first set of scans done (takes 1 1/2 hours). That night drink ANOTHER bottle of laxative. Thursday, February 24th- 8:00am get second set of scans (takes 3 hours), Friday, February 25th- 8:30am have ultrasound and liver biopsy, After biopsy be stuck at the hospital for 4 hours to be watched, NOT be allowed to drive myself away from the hospital, Make the 4 hour drive home.

The Octreotide scan sounds fun doesn't it? WHAT THE HELL is with the laxatives? As if having cancer isn't bad enough they gotta go and do this to a gal! UGH. Anyway- the Octreotide scan will show any tumors I have, any cancer seeds, and just basically will light up everywhere I have cancer. This scan scares the hell out of me to be honest. I'm afraid there is more there than we've previously thought and a part of me just really doesn't want to know. If I don't update when I get back it's because I'm falling apart to be honest.

The liver biopsy is being done because the nodule they removed from my liver during the surgery was just a bunch of excessive noncancerous tissue (fibrosis) which is actually normal for someone with MEN2a. So now they have to go in and get cells from one of the actual "lesions" to find out what it is exactly in my liver. What a mess.

So I will be gone from Tuesday night until Friday night doing this. Vin said I should just stay down there and he and the kids will come down and we can stay Friday and Saturday and use our Aquarium pass (thank you again to a great mother in law) to go to the Aquarium and hit the beach. I really wish we could afford that. Stars know we could all use the break from all this crap but it's already going to cost at least $300 for me to go down and back for three days. We just don't have the funds for extra days. :( Again, I hate this shit.

Dr. L is also taking me off the Dexamethasone which is the steriod I honestly think is causing all the symptoms I've been having. I am being put on Prednisone which is basically the same thing just a different try to get rid of problems. I have to also stay on the Flurinef as well so I will be on two lifelong steriods and with this new one if I get a cold, feel poorly, or get the flu etc I have to triple my dosage. If I have ANY nausea or vomiting I have to use my emergency injection kit. I don't know if I can inject myself. I really don't. I don't know if I can stick a needle in my leg without passing out. :(

So I start the Prednisone tomorrow and hopefully I will start feeling better. I was given nothing for the pain so I guess I'm just suppose to suffer. Gee thanks appreciate that.

Still trying to get ahold of Dr. R about the kids. If that doesn't come together by the first week of March then I'm going with the surgeon in Tampa. Keep your fingers crossed please.

Thursday, February 17, 2005

Update To Now

So much going on and most days I don't know which way is up anymore.

First and foremost, after much thought we have decided that I'm not going to be in the study at Duke University. Part of it was because of money, part was because of time and not having any family (besides Nancy who can only do so much herself), part was because I have a real problem being a part of a study that basically charges people to be in it, and the final straw was all this bull with now not knowing for sure if it's medullary cancer in my liver. I feel it's very important for me to find out what is going on there. So no study for me and I wish everyone in the study well. Hopefully they will pave the way for this study to extend to other centers and hopefully then I will be able to enter the study somewhere closer to home.

So... Dr. L had said she wanted to see me THIS Wednesday but turns out they scheduled me for next Wednesday instead which makes no sense considering I told them I most likely wouldn't be around. I really needed the appointment this week because I'm having so many problems right now. I have dry skin, excessive thirst, frequent urination, gaining weight in my face, dizzyness, I've had headaches that are turning into migraines for almost two weeks now, bone/muscle pain, nausea, and vomiting. I can't get ahold of ANY doctor to help me out either.

Dr. BC's nurse pract, H, called me yesterday and told me that they are going to want me to come to Tampa for a liver ultrasound, liver biopsy, and Octreotide scan probably sometime next week. She also told me that my test results from the bloodwork and stim test we had here were never faxed to them and SHE can't get ahold of anyone to get them faxed either. She asked how I was feeling and when I told her she said "Are you STILL on those steriods?". When I told her yes she said that is probably what my problem is. I tried calling Dr. L and got told that my test results were on her desk but she wasn't in so they couldn't give me the results until she signed off on them. I'm just so sick of this. :(

Today H called me again and told me that they want me there the 22nd for the liver biopsy (but no time or anything yet.. gee thanks guys UGH) and then on the 23rd and 24th I'm to have the Octreotide scan. So now we have to come up with the money for that trip (hotel for three nights, food, gas, etc) somehow. Do they not understand that it's not only rich people who get cancer? That we poor people get it too and how the hell do we pull this money out of our butts?? I mean seriously!

Anyway- so then Dr. L's new nurse, S, called and left a message saying that my test results were in but Dr. L had to look at them before they could give me the results and that should be tomorrow. So I have to call bright and early tomorrow morning and TRY to get someone besides some dumbarse receptionist on the phone so I can find out what's going on. I need to get off these steriods or at least have them lowered some more. I've been reading and the Dexamethasone is something I should only be taking once every THREE days if that at this point. I'm still on a half mg every stinking day though!! I'm tired of feeling like hell and being sick. Vin doesn't know but I throw up at least once a day now. :(

On a funny note, that first stupid pediatric endocrinologist the kids went to (Dr. NW) sent me a CERTIFIED letter telling me that she would no longer care for my kids. Ummmmm I fired you you, DUH. In fact, I have the copy of the email where I fired you the day BEFORE you typed up your stupid letter!! How retarded is that?? I mean really can we grow up here? All this letter was was a "you can't fire me because I quit" letter. Geez, and they give people like this degrees and licenses to practice. Unreal!

So now tomorrow I have to tell Dr. Wells for sure that I can't be in the study. I'm okay with that. A little scared but okay. I'm scared because I was reading a book I got from a sweet lady from amitymama (just a real quick story here. This lady lost one of her children last year to a farming accident. I can't even imagine her pain or how she feels yet she has so far sent ME two pairs of socks, 2 cards, and in the mail the other day two cancer books- Chicken Soup for the Survivor's Soul and Cancer Has It's Privileges. I am so humbled that even in her pain and heartache she thinks of me.) and in it was a passage from a man whose wife had medullary cancer that spread to her bones. She was given 5 years to live and died in 3 1/2. That scares the hell out of me to be honest. I know I don't have the cancer in my bones yet but the chances are pretty high that it will get there eventually. Then what? I'm not ready to die. I don't want to die. Why the hell is this happening to me? I have kids to watch grow up. I have to be here. This just sucks!

*sigh* So anyway- tomorrow I will update again on what my test results say, whether or not I get off these stupid steriods, and hopefully what time the liver biopsy is.

I have to call Dr. R tomorrow and try to set up some kind of consultation to see if he will operate on the kids. I'm really hoping he will because if we go to Tampa then the kids are going to have to miss a day of school just to go down for a consultation again. I mean we WILL if we have to that's not a problem. I'm just trying to keep them from getting behind in their classes is all.

So Dr. L, Dr. R, H, and who knows who else I will have to talk to tomorrow.

Friday, February 11, 2005

What A Pain In The Hiney!

I went in yesterday for my stim test (the test on adrenal function). That was NOT fun let me tell you! They took blood in my left arm and then injected something into my right arm. Half an hour later they took more blood from my left arm. Then half an hour after that they took more blood out of my right arm this time. So in less than 24 hours I was stuck three times in my left arm, twice in my right, and had 11 vails of blood taken. Ugh, this whole thing sucks and I curse MEN2a once again. LOL. Afterwards I felt a little queasy but nothing bad. I also felt really tired all day but had so many phone calls to make to various places and people that there were no time for a nap.

Later in the day, Heather (Dr BC's NP) called me and said that Dr.BC wanted me to overnight the CT scans of my abdomen to him. I asked her how I knew which ones would be the abdomen and she said they should say as much on them. She also said Dr BC is going to want to do a liver biopsy (ANOTHER one I should say) and an Octreotide scan on me as well.

So I go get out my scans and not a single one says the word abdomen or anything else referring to a part of the body. :( I tried calling back but everyone was gone for the day by then I guess. So between that and Vin having to work overtime the scans were not sent out. I called Dr BC's nurse (Roz) this morning and when she called me back she said to send ALL my Ct scans. I also had her check and see when they wanted to do the liver biopsy and scan. She said it hasn't been ordered yet.

I'm having a real problem with this because it is two weeks until I'm suppose to enter this study at Duke (IF I do the study). They will get the scan films I'm sending on Monday and I have a feeling they are going to tell me to be there Tuesday or Wednesday for the biopsy and scan. HOW are you suppose to do this crap with a family? I mean I just don't know how other people with children do this. I guess they probably have family to help out but still... this is just getting so old so fast. I told my mother in law that at this point I say we just forget everything with me, get the kids taken care of, and go to Disneyworld. LOL.

So anyway- just trying to figure out everything still and it just seems to be getting harder day by day. At this point I honestly don't want to be in the study. I just want to go on with my life, get the surgeries I need to, take care of my kids, and then go from there. This has just become a huge pain in the butt and it shouldn't be.

I'm still feeling pretty good after surgery. All the sterile strips have come off now so I'm stuck with stickies all over my stomach. :) Some of the scars will heal up okay but some of them are already looking like crap. It sucks but I knew it would happen so at least I'm not shocked or anything by it. The only problems I'm having right now are a headache that just won't go away and I've been a tad nauseated the last few days. Hopefully they will both clear up soon. I don't want to have to go back to taking the Vicodin for the headache. That's all I need is to be a Brett Favre and hooked on Vicodin. LOL. Sorry, bad joke.

Wednesday, February 09, 2005

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

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

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

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

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

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

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

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

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

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

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

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

Monday, February 07, 2005

February 7th, 2005

Well over the weekend I finally got some decent sleep which felt really nice. I went to the store on Saturday with just Bret and picked up a few things we needed. I got somewhat tired but not too bad and having Bret with me made sure I didn't forget what I was doing. LOL

I emailed Dr. BC and his nurse practitioner as well telling them that it had been a week now since I had asked about the carcinoid syndrome and would like an answer. :( What is with doctors being so ignorant? I just don't get it!

I also emailed Dr. L telling her that she needs to contact me before Wednesday so I can catch her up on what is going on. I also told her that the adrenal function test needs to be ordered NOT discussed by Wednesday. I told her she can call me anytime this week and if she doesn't then she needs to be prepared to alott me a half hour of her time on Wednesday. So she was given a choice. If she doesn't call me before Wednesday then I WILL be staying in that office until we go over EVERYTHING.

I didn't get my blood drawn today or turn in the urine sample. Halfway to the lab I realized that I forgot the paperwork I needed so I had to call them and just tell them I will do it after my appointment on Wednesday. :( It seems that NOTHING about the after part of this surgery is going right. This stuff should all be done already darnit.

The study- some people have asked about the study. We're discussing it right now. We've found some things out including that our insurance is charged for all the CT scans and bloodwork they do during the study. What the insurance doesn't pay we have to pay. Nice isn't it? I play guinea pig AND I pay for everything AND pay my own gas AND pay for daycare and in return I get a maintenance drug that sounds like the ones that are already out there. So anyway- we're trying to think about everything to make the best decision.

I also need to contact Dr. LK to see if he will come on board as my oncologist. He knows MEN, MTC, carcinoid tumors, and neuroendocrine tumors so he's a good person to have on board.

Today I felt better than I have in a very long time. I have energy and didn't feel the least bit tired. It's honestly been over a year since I've felt like that. Vin seems to be getting a cold (NOT good for me because the Flurinef suppressed my immune system) so I made some homemade chicken soup for dinner and then had enough energy to premake some eggplant parmisan for dinner tomorrow. :) I was so proud of myself and it felt good getting something done. I also worked on my knitting a little more (I've unraveled the same scarf three times now) and will probably finish my first scarf by bedtime.

Tomorrow I try to contact doctors again, hang out with Lil Man, maybe do some cleaning, and just see how I feel. Today was the first day of taking only 0.5mg of the Dexamethasone and so far so good. Now to get the adrenal test and hope that what's left of my adrenal gland is working so I can get off these steriods for good.

Friday, February 04, 2005

Life After Pheos

This is the update since I was released from the hospital a week ago. I want to catch things up so I don't forget everything.

Friday (January 28th) after leaving the hospital we proceeded to take a drive through Tampa. LOL. So much for resting. Vin showed me where the Aquarium was and then we drove over by Clearwater to visit the Italian Market him and his mom had found. It's a cute little hole in the wall with the most wonderful little Italian woman you have ever met! She kept calling me "sweety" and "baby" and asking me how I was doing and to get better. Too cute! I wanted to take her home and have her be my mama. LOL. We had some very good riceballs (even Lachelle liked her's if that tells you anything!), got some Boylan sodas for Vin, some italian cookies, and a few other things and then finally went back to the hotel.

Once there I felt that horrible wired feeling still and couldn't sleep. I took a shower and then laid on the bed holding Lil Man in my arms (the lil guy climbed up with me, stuck a hand up my shirt, sighed, and fell right to sleep) while the older kids read on their bed and Vin tried to get the laptop to connect to the internet. Later on we ordered some stuff from the TGIFriday's and watched a little TV.

While everyone else slept that night I didn't sleep at all. Not a single minute even. I wanted so badly to just go to sleep but I couldn't get comfortable and was having such a huge adrenaline rush that there was no sleeping. So I laid there all night holding Aidan, rubbing the back of Vin's neck every so often, and just letting my mind race.

Saturday morning we got up and gathered our things so we could finally leave. While Vin and the kids had breakfast in the little cafe I asked to talk to the manager of the hotel. When he came out he gave me this look like "oh great" so I looked him square in the eye and said "Listen, I don't want anything free or discounted. All I want is for you to honestly listen. I am a patient at Moffitt and my family stayed here this past week. When I called to set up the room I specifically asked for adjoining rooms that you can walk through. The girl said they had them, we could book them, I did, and then my husband even called back confirming a second time that you could walk through the rooms. When we got here on Friday we were a bit early and told the rooms would be ready around 3pm so no biggie. We came back at almost 5pm and check in is at 4pm, and were told not only were our rooms not ready but that the only rooms you had were just side by side. We ended up not getting the rooms we booked and had to settle for side by side. Once we got into my mother in law's room we noticed that HER room had a door to another room and asked about being moved. We were told someone was in there and we could move the next day. The next day more lame excuses even though no one was in the room." I then proceeded to tell him, "Not only that but this is our second time here and for the second time your carpets turned my children's feet black. I know it's from your carpets because it happens after bath time. That is disgusting as is the roach my son killed in the bathroom that you could have ridden through this lobby." He looked at me and gave me that lame line about how sorry he was and that they get the carpets cleaned once a month. I told him "You need to fire your carpet person because they are disgusting! You are on Moffitt's list for hotels for families of cancer patients to stay at. You need to take that more seriously. My family already had to worry about me in the hospital and they didn't need to worry about the hotel they were staying in as well. If you can't have a decent standard then you need to take your name off the list. Unfortunately we'll probably stay here again because the price is good but to be honest at this point I would rather spend more money somewhere else that I know isn't gross and my family is taken care of at".

He gave me his card and told me next time we were coming to town to email or call him and he would make sure we got one of the newer rooms and were taken care of. :( All I can say is he better HOPE we're taken care of. As I said, I didn't want anything free. I just want them to realize what they are doing. If a hotel is on a list for a cancer center then to ME they should have a certain standard. Families have enough to worry about without worry about roaches and filthy carpets.

After everyone was finished with breakfast we checked out and then I called Dr. BC. He told me to call him before we left town so we could make sure everything was alright for me to leave. I informed him that I have had the wired feeling all week and am not sleeping so could he prescribe a sedative when I get home, blood pressure is good, pulse is good, have a headache but all in all ready to go home. I hung up with him and we went back to the Italian Market to get some sausages and such that Vin wanted, a Mouffelatta sandwich for the road, and then stopped at Starbucks so Vin could have one last cup of his Vanilla Mocha thingamacoffee. LOL. Then we headed out of town.

The trip seemed so long and I was tired but couldn't sleep. Lil Man wouldn't go to sleep either so we stopped more than we wanted and he was quite irate. We finally got home around 4pm and just brought in what we needed for the night. I thought for sure I would be able to go to bed and sleep like the dead now that we were home. Instead I started having facial flushing (face heating up and turning red) and had to fan myself several times. I also started getting an awful headache that was starting to throb. Blood pressure was normal the whole time though.

Saturday night was another night with no sleep at all. I was wide awake the whole night and my mind wouldn't stop racing. The things you think about at times like that I swear. In my head I wrote an email telling my ignorant sister what a bitch she was for never even bothering to email or call me to wish me luck on my surgery, wrote my update from the surgery, did a grocery list, had conversations with people that were perfectly scripted... it was a mess let me tell you. LOL. Then I was hit with gut wrenching stomach cramps and diarrhea. I was suppose to be constipated according to Dr BC so that scared me some. Everytime Vin woke up I was staring at him and almost in tears because I just wanted to sleep.

Sunday morning I started with the flushing, the headache, and some dizziness. I called Dr. BC again and told him to which he replied that it sounded like now that the pheos were out the "carcinoid" that they thought was in my small intestine was kicking in along with the calcitonin. In other words, with the pheos now gone the cancer was able to make itself known. This whole time the pheos, hyperparathyroidism, and cancer have balanced each other out so I've been normal. Without one the others now feel it's time to play. Dr. BC said he would find out what he could put me on that wouldn't disturb me being in the study at Duke and then get back to me. I spent all day feeling crappy, starting to feel sore from the surgery, and just wishing I could get tired and go to sleep. I emailed Dr. BC and his nurse practitioner telling them that I was going to need a sedative to help me sleep until we cut the steriods back some more as well as asked Dr. BC to explain to me this carcinoid thing since he was the first person to ever mention it to me.

No sleep at all for me Sunday night. I laid there until about 11:30p just thinking about things, got up and worked on the blog until 3am, and then laid down again until 6am when I got the kids up for school. Again, I wasn't the least bit tired even though I hadn't slept in days. I wanted to clean the house, run around the block, and do some exercise but instead still have to sit here because I didn't want to push things after the surgery. After getting the kids off to school I laid back down with Lil Man and just waited for him to wake up.

Monday the nurse practitioner called me back and emailed me as well and said that Dr. BC would fill me in on the carcinoid thing in a day or two and that they were prescribing me Ambien to help with the sleep. I told her the flushing and other symptoms were starting to get a little better and that as far as the surgery went I was feeling fine. Didn't do much on Monday but hang out with the little guy and sneak in a load of laundry. It figures the one time in my life I actually WANT to clean and do stuff and I can't. LOL. Heather (the NP) also told me that Dr. BC wanted me to have my calcitonin levels checked and a 51HAA Seratonin check (24 hour urine test). Of course, she didn't tell me that it was the 24 hour urine test and instead she thought both tests were blood draws. So we started trying to see where I could go to get that done. Found a place out by the airport, she faxed them a prescription to get the draws, I called to make sure they received it, and then set up an appointment to get the blood drawn the next day at 11:30am.

Monday night I took one of the Ambien's and proceeded to have the night from Hades! It didn't make me the least bit tired and as I lay there hoping for sleep I started to feel like little pieces from my head were floating away. Seriously, it was the most messed up thing I've ever experienced in my life! Then my bone/muscle pain got so bad that I was literally trying to pull my arms and legs off as I lay there in bed. I tossed and turned all night STILL not sleeping and once morning came I felt like I had been hit in the head with a sledgehammer. I told Vin that it's bad enough not to have slept at all in days but to add that to it was pure hell. :(

Tuesday morning I went to get the blood drawn just to find out that 1- the place was a total shithole. Seriously it was by an airplane hanger, dirty, and the people there were just plain rude and stupid. Welcome to South Georgia yet AGAIN. *eyeroll* When I got there the receptionist had no clue if they even received my fax and just looked at me with a blank stare. I looked back at her and said "Do you think you could bother LOOKING for it?". That of course got me a dirty look which of course got her one right back. LOL. Then a nurse/person pretending to be a nurse/whatever looks by the computer and goes "Is this it?". I said "If it says my name on it then I think you have a winner there". So once they figured out that YES they DID have a fax with my name on it I was informed that the girl who does blood draws was out to lunch. When I asked them to just give me my damn paperwork so I can go somewhere else they said she should be right back so I figured I would wait a few minutes. When she came back she told me she was going to look up the tests to make sure you didn't have to do anything special, I told her good idea because you DO have to, and then a few minutes later she came out holding her little book telling me that the Seratonin test was a 24 hour urine test and that they didn't have the chemicals to do the test anyway.

So I took my fax with the paperwork and left. When I got home I called Heather (NP) and told her that she needed to tell me AHEAD of time if something is a 24 hour urine because you have to.... COLLECT the urine for 24 HOURS ahead of the test. Kind of important there. She said she didn't know and thought it was a serum test like the calcitonin. I told her I would see about setting the tests up at Dr. L's lab even though I don't want to go there. Asked her AGAIN to make sure Dr. BC called me regarding the carcinoid thing, told her what happened on the Ambien (to which she was shocked and said she loves the stuff), and told her that yes I was still having carcinoid syndrome symptoms but they were slowly getting better and no real pain from the surgery.

Throughout all this we had been slowly tapering off the Dexamethasone so that I have been starting to feel somewhat normal. Even a little tired at times and slept for a few hours on Tuesday night.

Wednesday I tried calling Dr. L to get back in contact with her. I honestly don't know WHAT she expected from me. I was so thankful to her for all the testing she did, stayed with her even though she said she didn't know much about MEN2a and so on, and even asked her opinion at times but when I had to start finding surgeon's and doctors and all the info on my own for everything what did she expect? She was shitty to me the last time I saw her and showed no interest in anything I had to say. So WHY should I go out of my way to inform her of everything I'm doing? If she's not going to be a partner with me in this and HELP me find doctors, trials, and info then at least refer me to someone who will.

Anyway- got nowhere on Wednesday with that office as usual, didn't hear back from Dr. BC, and just hung out around the house with Lil Man. Actually felt pretty decent for once and almost human again.

Thursday I finally got ahold of Dr. L's nurse (B) and started setting things up. I set up an appointment for next Wednesday to catch up with Dr. L and fill her in on things, set up to have my labwork done on Monday afternoon, and also asked B about having the adrenal function test set up. She said she would get back to me as soon as she found something out and that it was her last day of working there. :( That made me sad because she is the ONE person in that entire office that wasn't a screw up. She was the one person I could depend on who would get things done and do them right. Now I'm afraid of what we're going to go through with these people again. *sigh*

Friday Dr. L's new nurse (Nicole) called me and told me that Dr. L would discuss the adrenal function test with me on Wednesday. Ummmm time to break in the new nurse. I informed her that NO we would not. She stuttered a little and I told her "This test needs to be DONE next week not discussed. Dr. L needs to either order the thing herself or tell me where I can go to get it. I'm not playing games here. The surgeon wants it done next week not talked about and I'm not staying another week on steriods if I don't have to so tell her to either order the damn thing herself or tell me where to get it.".

I then told the girl that Dr. L needs to call me this weekend to which I got "Well she doesn't do that but I will tell her. I'm afraid you might have to wait to hear from her though". LOL. New girl is so cute. :) So I told her "Look it's like this, she gave me her home number, cell number, and pager number so I CAN call her anytime I WANT to. I am trying to be courteous and allow her to call me at HER leisure so either she calls me or I will call her Sunday night".

I hate being a bitch but at this point I've realized I have no choice. Doctors don't want to help you. They want you to just sit there, take whatever piddley ass excuses they give you, bill you for it, and then leave you hanging. My life is too short for that so yeah, now I'm the patient from hell and hard to deal with. Oh well, they'll still take my money just the same only now they actually have to work for it. Not how things SHOULD be but it looks like how our society has become.

So as far as the surgery goes- I seem to be recovering fine. We still don't know if what's left of my adrenal gland is actually functioning or not but hopefully we'll know in a week or so. As for the "carcinoid syndrome" or the symptoms I now have since the surgery- they're getting better. I still have the flushing but not like I did at first. I get headaches alot still, dizzy at times, and I tire very easily but hopefully all that will ease up with time as well. The diarrhea (LOVE posting that in my blog let me tell ya. UGH. But I know that it's important too because it's part of all this) isn't bad either which I'm thankful for because from what I hear it's one of the big problems with the high calcitonin levels.

Oh and even though I'm awake at 4am right now- I've been sleeping better lately. I've been getting at least 4 hours of sleep a night which is what I got before the surgery so not too bad. I even had a nap on Friday when I overtired myself out by going grocery shopping with Vin. I've never been so thankful for a nap in my life. LOL. Now if only the paleness would go away. I'm so tired of being ghost white all the time but it's not something I'm going to waste any actual time worrying about.

Tuesday, February 01, 2005

Surgery One- The Adrenalectomy (Part 2)

Wednesday, January 26, 2005- As I said, I woke up at 6am when the nurses came in and started talking to me. Between 6am and 8am Dr. A came in to check on me and so did an Internalist who honestly was the one doctor who spent the most time checking on me during my stay. Around 8:00 a male nurse (Robert who has a daughter named Jolena- see, I remembered. :) ) asked me if I would like to sit up in a chair. I was feeling even more like I had a bunch of broken ribs and the pain in the side of my neck was definately getting worse but I knew that sitting up meant I would heal quicker and get out sooner so of course I jumped at the chance. Robert helped me into the recliner and got me settled in as we talked about things like how we don't like George Bush and so on. LOL. He turned on the TV and I got my first showing of the show "Bridezillas". OH MY GOODNESS!! I think the most horrifying part was the fact that these men actually still married these women! OY VAY!!

Anyway- Robert noticed I was watching the clock because I thought visiting hours started at 10am and I was wondering why my family wasn't there. I guess he said visiting hours were actually noon- 6:30p and then 8:30p- around 10p. That was a little deflating but I could understand. Dr. BC's nurse practitioner, Heather, visited me and told me that she had been thinking of me and wanted to check on me. Again, VERY sweet woman and very personable. As it got closer to noon they told me that they had a regular room for me on the next floor so I was getting out of SCU. WOOHOOOO. They loaded me up in a wheelchair and away we went!

I got up to the new room and I honestly think they should charge you for a CLOSET rate for that room. It was the smallest hospital room I have honestly ever seen! The bed barely fit in there and you had to walk (well not me but the nurses) along the walls just to get by it and then to get to the chair that they sit me in. All I could think was I wasn't going to get to see my kids much if there was only that much room in there because everyone would go nuts. :(

As soon as I got settled in a nice little nurse named Rita Black came in with the most adorable accent (I swear it was Irish!) and was so sweet. She just started talking to me letting me know who she was and that she would take care of me and so on. She also introduced me to the Tech named Christine/Cris who was also a real doll. Shortly thereafter the family showed up and it was so nice to see everyone. Vinny immediately commented about how small the room was and asked whether or not there was a larger room. Rita said no but then said they were bringing someone else up in a few minutes for the room next door. Of course, Vin asked if WE could move into that room instead since I was already up here. Rita being the angel she is jumped right on it and we were moved into a much (okay so much in MY mind anyway) bigger room and everyone could actually stand in there.

An associate of Dr. BC's came by to check on me (NO personality and not a very friendly or knowledgable chap), couldn't answer any of my questions, checked my incisions, and left. One of the girls I had met the night before came up with her daughter and baring a stuffed elephant, book, and cozy blanket (THANK YOU, CHRISTINE) and visited for a few minutes before leaving. Vin and the kids only stayed for a short time after that. I wanted them to stay for awhile but it seemed almost as soon as Vin brought Lil Man into the room he was taking him out and saying he was going for coffee and to take Lil Man for a walk (I'm still mad at you for that yes). :(

So the family left and I was left back to sitting there feeling like my ribs were broken and wishing the pain in the side of my neck would stop. Morphine still didn't help much and saying the word "discomfort" let the nurses know I must have been just fine I guess. I would really like it if each of them could experience that just once so they knew in the future what it felt like. I was finally allowed a liquid diet so for lunch I had some broth (which at the time tasted like salty liquid ambrosia. LOL), a few bites of horrid jello, a few bites of lemon ice, and then was ready for a REAL meal. I have never been so hungry in my life- seriously. No clue what caused that but I was beyond hungry at that point. Knitted for a little bit on my ugly scarf, talked to my friend Julie on the phone for awhile, and then I tried to sleep but again the wired feeling was there and I couldn't sleep and felt like I wanted to race around the hospital.

Vin, the kids, and Nancy all went to the beach for a bit collecting shells and let the kids walk around there for awhile. Afterwards they had dinner at Landry's which was nice because they weren't cooped up in the hotel room. That night they came back up to see me for a few minutes (VERY few- yep still mad about THAT too), Vin and I got in a HUGE argument (niceeeee I know), and they left. Later on I called to tell the kids "goodnight", Vin and I talked for a few minutes, I stayed mad, told him to thank his mother for everything, and then tried to get some sleep AGAIN.

A new nurse came in named Donetta and was there throughout the night. NICE NICE nurse and I really liked her. She asked me questions about everything and even took a real interest in my story. Couldn't sleep so I read a book of Vin's that he left for me (John Saul's new one- STINKS DON'T BUY IT!!). I stayed up until 2am trying to sleep and then slept off and on until almost 7am when the nurses woke me up again. Oh and I never saw Dr. BC once at all on Wednesday. Again- SHAME on you!!

Thursday, January 27, 2005- Dr. G from anesthesia finally came to see if I ever had a bad reaction to the anesthesia, Dr. A came to check on me quickly, the internalist stopped by, Dr. No Personality stopped by again, said I could have the catheter out, and I asked him if he knew why I had been cut on the stomach and not the back. He of course had no clue.

THEN OH MY GOODNESS IT HAPPENED!!! Dr. BC actually showed up!! Again- take some time to talk to people. SLOW DOWN. I felt like every question I asked was a nuisance and he was in a hurry to get away from me. It just doesn't settle well. I did finally find out why I was cut in the abdomen and not the back. He doesn't do laparoscopic surgery through the back!!! HE never told me this either. Everything you find online or other doctors talk to you about is having to do with incisions through the back. Of course, I assumed he would do the same procedure. Had I known I would not have had him do the surgery. Anyway- so he's never done it through the back, this is how he does it, so this is what I got.

So I do NOT recommend the doctor at Moffit for adrenal sparing laparoscopic surgery IF you are wanting it done through the back. If you don't care then they did just fine. ;) I AM thankful to them for being able to spare part of one gland and I'm not saying I'm not or trying to be rude. I just can not believe how much I have learned about what the medical profession lacks and how much the patient honestly has to do themselves. It shouldn't be that way and I DEFINATELY should have been told ahead of time. Oh well nothing to do about it now. *sigh* So they hinted that I should be going home by Friday, said a few more things, and then left.

Christine (the tech) came in after they were done and told me that I could walk around some if I felt like it. WOOHOO. So I proceeded to walk HER around the entire floor and back. Honestly? I was beyond exhausted from it but so glad because I knew it meant SOON I was going home. I came back and asked when the catheter came out just to be told that Dr. No Personality didn't write on the orders to remove the cath so they wouldn't remove it. :( I thought I was going to cry. A tray was brought into me with more broth and I pushed to have some REAL food by night time. LOL. I read the rest of Vin's book, tried to nap, didn't happen, and the family came to see me. Again, very short visit and then they were off to the Aquarium before Nancy had to catch her flight back home. Hugged everyone as they left and then went back to knitting.

Everyone had a wonderful time at the Aquarium, went to the book store, and then took Nancy to the airport. Christine (the friend) brought both of her kids up and we talked for awhile while they watched cartoons. Her little girl kept asking me if I was okay. VERY cute and even though she was worried about her son behaving he did wonderfully! Truly. She brought me MORE presents too. LOL

I was actually brought a tray of food for dinner and made a royal pig of myself. It was embarrassing I tell you! Later Vin and the kids came back up to see me just as I was taking a second turn around the floor. :) By this time the IVs were out accept for a line in my arm so they could still give me a few meds, I was taking my steriods by pill now, and all I still had to use was the pressure cuffs on my legs for clotting and that stinking catheter.

Got back to the room with Lil Man walking right next to me and they all ate their dinner they had brought with them while I talked to everyone. Longer visit that time and it made me so happy. Vin brought me some more books to read and then left to go do laundry and get the kids to bed. Talked to my friend Julie (and her hubby in the background. LOL) for awhile too. That helped to keep me sane.

Donetta was my nurse again that night and she actually told me that she had looked up some of my stuff to learn more about it. I was honestly touched. I also found out that she had a thyroidectomy so I talked to her for a few minutes about what it had been like since. I even gave her a link to this journal in case she wanted to read up on some things. So if you are reading, hello Donetta and thank you for being such a great nurse! I tried to sleep again that night but the wired feeling was again present and even though I brought up that I wasn't sleeping to the doctors they didn't seem to think anything of it. From the time I woke up from anesthesia on Tuesday until I left on Friday I slept a TOTAL of maybe 10 hours. I'm not exagerating either and really wish I was. :( I would have much rather slept and been fully rested when I left. So I tossed and turned from 2am on, finished one of the books Vin had just brought me, and then laid there until 6am waiting on doctors.

Friday, January 28, 2005- Donetta (the nurse) came in and told me she never got to check out this site but that she was going to. I chatted with her for a few minutes and then was visited by the internalist again who hinted that I was going home today and Dr. No Personality came in as well, said they were suppose to take the cath out yesterday and told them to take it out again, and actually shook my hand. Dr. BC stopped by and said I was out of here, gave me my orders, told me what to do and what to take, nurse took my cath out, and then I ate my breakfast as I waited to call Vin and the kids to come get me.

I had told him to sleep in since they had all been up late all week and it was his birthday. I finally called at 10am and ended up waking them up after all. I got up and walked around the room a little bit while I gathered all my stuff up and had a nice hot cloth sponge bath (gave it to myself thank you very much).

Meanwhile Vin and the kids got up, got breakfast, did some stuff on their own, and then came up around noon or so to get me. Vin brought finally brought my bag of clothes up so I could put on REAL clothes and I almost jumped for joy. I also got to FINALLY brush my hair for the first time in several days. Funny the things that mean so much to you when it comes right down to it. :) After getting dressed we ended up having to wait around for about another hour for no clue what. Finally we went out to the nurse's station and asked what was taking so long, got the final orders to go, I hopped in the wheelchair, put Lil Man on my lap, and we were outta there!!! From there we went down to the pharmacy to pick up my prescriptions. About half an hour later we were wheeling out the door, getting in the van, and squeeling tires out of the parking lot! Okay so I'm kidding on that last part but it WAS nice to finally leave. LOL

The medications and directions for them were this- DEXAMETHASONE 2mg pill every 12 hours twice a day for two days, then 1mg every 12 hours twice a day for 4 days and then 0.5mg once daily after that, FLUDROCORTISONE (Flourinef) 0.1mg pill once daily, HYDROCODONE/APAP (Vicodin w/Tylenol) 1 to 2 pills every four hours as needed for pain. I also have to have another test done in about another week called a Cosentropin Test to evaluate adrenal function. After that I will start on Hydrocortisone although I don't know if that ONLY if I'm showing no/low function or no matter what. Another thing I have to find out.

Right now I'm not allowed any strenous activity, no lifting over 10lbs, no driving while on pain meds, and the sterile strips should come off in about a week.

I will work on what has happened since my release from the hospital over the next few days and post it hopefully by Friday. This way everyone has time to read this before I give you all the LOVELY details of the things that have happened since Friday. :(
Surgery One- The Adrenalectomy (Part 1)

Sorry it has taken me so long to write this. It's been a long week to say the least. I'm going to post everything in one post so that those who actually read here can get the whole story without having to jump around. I'll break it up and make it into individual posts later. :) I'm also not going to be using proper paragraphs so forgive me. LOL

Monday, January 24, 2005- We left early Monday morning for the almost 4 hour trip to Tampa for my Pre-Op appointment at H. Lee Moffitt at 3:30p. The trip went okay and we got there at least an hour early. Kids were all good in the car and I can not thank my mother in law enough for the portable DVD player she gave us! It has been a real life saver especially with Lil Man. He will actually sit in the van now and watch one of his movies instead of screaming "Let me out of here!!" every 10 miles. I even taught myself how to knit a simple knit stitch and I was on my way to making my first ugly scarf! :)

To add some backtrack info a little- Friday night at around 10pm I received an email from Dr. BC saying he wanted me to be seen at his clinic before my Pre-Op appointment. He didn't say WHEN he wanted to see me and even though I emailed him back I never heard from him again so no way of getting a time either. So we just figured if I got there early then I went and if not then I went to my other appointment that I did have a time for.

So anyway- we got to Moffitt early so I went to Dr. BC's clinic and told them he wanted to see me. We ended up sitting there for almost an hour without me being called back and I finally told them I have to go because I have another appointment. The receptionist told me to just walk back to the nurse's desk and ask them so I did. Just so happened that the nurse practitioner I was suppose to see came up, weighed me, and she took me right into a room and got started. Very nice lady (Heather Roulstone) and seemed genuinely concerned. She asked me about the history of how I found all this out, took my sheet saying what all I was taking, was very personable, and even hugged me at the end. :) It was nice dealing with someone that had a nice bedside manner the eve before my surgery. Dr. BC wanted to start me on yet ANOTHER alpha blocker but I put up the red flag on that and asked why considering my blood pressure was low naturally and even lower thanks to the alpha blocker I was already on. Heather said she honestly didn't know and we would have to ask Dr. BC.

After that I went upstairs where they registered me, let me know what was going on, and then questioned the alpha blocker as well. In the end we ended up not doing the second blocker thankfully. Had some blood drawn and was told what to do and not to do that night. We were scheduled to be at the hospital at 5:30am the next morning and surgery at 7-7:30am.

**Here I will say that Holiday Inn/Tampa-Busch Gardens is NOT a good hotel!! :( We had booked two adjoining rooms with a walk through so that Nancy would be able to get back and forth to be with the kids easily. We ended up having to go round and round just to not get the kind of room we booked and had to wait an extra hour just to get a room and they were NOT booked up! Once Nancy got into her room we found out that her WAS part of a walk through set so we asked to be switched. Supposedly someone else was in the room next door, they would switch the next day, bunch of lame excuses later it never happened. Their carpet is also disgusting. The bottoms of my kids' feet were BLACK by the end of the night from walking on it. This is the SECOND time that has happened there by the way. My oldest son killed a roach you could ride through the lobby in the bathroom. Usually bad hotels aren't that big a deal but when there is so much else going on you at least want to know your family is taken care of while you are in the hospital. BOO FOR YOU HOLIDAY INN!!!! **

I got to meet a couple ladies from a message board I'm on at the TGIFriday's that was in the hotel after we got settled into our room. Both were very nice and I'm glad I had the chance to hang out with them. Afterwards we picked my mother in law (Nancy) up at the airport and then went to an Italian restaurant (Buca di Beppo) to eat. The place was really neat and had funny, risque, and just all around neat Italian pictures all over the walls. Lil Man kept trying to drink Grandma's wine the whole time. He would dip his straw in it and then sneak it to his mouth for a taste. LMAO. He knew he wasn't suppose to either because he kept looking at me when he did it and I would shake my head. The oldest two kids and I especially liked the Pope Room. We called it "Pagan Hell". I ended up getting sick as soon as we got back to the room but loved the company while there. :)

At the hotel we got the kids to bed, told them each I loved them, said good night, and then laid down with Vin and the little guy in the middle. All I could do all night was just hold Lil Man tight, cry a little, look at my oldest two, and pray to any God listening to please just let me make it through the surgery the next day. For the first time in my life the thought "I don't want to die" wasn't just something you think of as you think about getting old. It became a plea from the depths of my heart and I hoped The Fates wouldn't screw me on this one thing. I wasn't ready to leave my babies yet.

Tuesday, January 25, 2005- This is where it gets ugly. Not surgery-wise but what they do to you BEFORE surgery in a little place called BILLING. We were at the hospital at 5:30a like we were told to be. No one bothered to even acknowledge us until almost 6:30a and that was only to bring us to this little desk off to the side. I figured they needed the new insurance info and some other stuff real quick. I sit down and the lady goes "Someone should have talked to you sooner about this. They did try to contact you but you weren't at home". Then she slides a paper to me telling me that they want me to pay AT LEAST a $3000 deposit on the almost $8000 we will supposedly owe (base cost more was added) right that minute for the surgery. I informed her back that I stay at home and NO ONE at ANY time tried to contact me so that was a lie (come to find out they did try to contact me... after they knew I had already left for Tampa on Monday- came home to a dated voice message... idiots!)!! She tells me we have a "very high deductible" (lady the thing is $3000 for crying out loud! That is not high compared to most insurances!) and would we like to make a deposit? I told her HELL NO I DON'T WANT TO MAKE A DEPOSIT!!!

I was soooooo unbelievably mad at that point. I could not believe that they would hijack a person like this an hour before they are going into surgery. Do they REALLY think you can just whip out the checkbook or Mastercard and have that kind of money on the spot? Vin was about to go through the roof as well and went into a speech about how messed up it was to tell a person ON THE MORNING OF THEIR SURGERY that you want money from them. I was suppose to be keeping my blood pressure low for the surgery. I mean low blood pressure was what it was all suppose to be about. In the end the lady told me they could have me pay the almost $8000 they wanted for the bill out over six months. I told her fine sign me up for $1300 a month and be sure to make it out to Mrs. KISS MY ASS because that was who was going to be signing it and sending it back! *mad*

So for anyone in connection with the billing/financial aspect/decision making process at H. Lee Moffitt Cancer Institute in Tampa, Florida who may ever see this... YOU SUCK!!! I can completely understand you wanting your money and I have no problem with that but how DARE you do that to a person right before their surgery. You have proven without a shadow of a doubt that money is the almighty Higher Power there and people be damned. You people make me sick! You made sure I do not want to come back and will only be back if I HAVE to be!

Anyway- after that fiasco we finally go on to another waiting room and are called back immediately. We go into this little "room" that has a curtain door, they ask me to go give a urine sample, get into a gown, take some blood, and then I get to start meeting doctors. I remember Dr. G from Anesthesia who was a nice guy that told me what they would be doing anesthesia-wise and that they would give me something to relax me before going back. Dr. A who was assisting Dr. BC also came in and introduced himself. Nice man as well. He was chastised by the nurse though because he didn't mark on me what was happening on which side. That was kind of funny. Dr. BC passed by the room and I THOUGHT he never bothered coming in to see me before the surgery but Vin says he came in, tried to show Vin what he was going to do, talked to me, and tried to get me to sign something but I was out. I don't remember ANY of it. I thought he didn't bother talking to me at all so now I feel like a weinie.

My IV line was put in and Dr. G told me they would be giving me something to help calm me so I wouldn't be anxious before the surgery. I was very thankful for that because I was nervous but didn't want to seem like a wimp and ask for anything. I was given the relaxing drug and then I honestly don't remember much after that. I don't remember saying goodbye to Vinny. I do remember being wheeled down a hall and into a room. I also remember Dr. G telling me he's putting an oxygen mask on me and me saying okay. Then I was out for the rest of the day. No counting backwards from 100 for me. LOL.

When I woke up it was to bright lights and a bunch of people moving around telling me "hi" and asking if I heard them. I could also see Vin fade in and out of my sight on my right side. Then the nausea started. The ONLY thing I could think of at that point was that I was going to be sick!! I finally croaked out through a sore throat that I was going to throw up as they ran for a container and for meds to stop the nausea. Then I faded in and out a little more to Vin's voice telling me he has a surprise for me, something about Bret Favre's book, and that he doesn't think he will bring the kids in. I remember telling him I didn't want them seeing me like this and okay. Then I slept for another hour or two.

When I woke up this time I realized I was in the SCU (Special Care Unit) and a nurse was asking me if I was alright. My throat hurt (from the tube they put down it) and I was still somewhat nauseated but felt okay. Respiratory therapy came in and had me suck in through this tube to test my lungs, said I did an awesome job (it hurt so bad but I knew that the deeper you breathe the less chance of bronchitis and pneumonia you get so I breathed in for all I was worth and darn the pain!).

I finally gathered my senses enough to wonder why my back wasn't hurting and feel around on it. There were NO cuts to my back! My heart dropped because my biggest fear the whole time was them having to open me up completely across my stomach. When I felt my stomach and noticed it hurt and there were cuts there, my heart sunk even lower. Luckily at that point a nurse decided to look at my incisions and I saw that I had a bunch of small incisions in my stomach but not one big one. Relief set in somewhat and I figured that they just hadn't been able to save any adrenal glands and must have had to do it through the front for some reason.

Vin came back around 8pm that night and told me that they were able to save part of the left adrenal gland but couldn't save the right because it was too close to the vena cava (?) vein. I asked him if he knew why I was cut on my stomach and he said he didn't know either. :( We let my oldest son come in and I got to talk to him and let him know I was fine. He and Vin left shortly after that with me telling them to let Lil Man and Sis know I loved them and then the nurse told me about my Morphine drip and button, let me know they were giving me steriods (DEXAMETHASONE), meds for nausea, another pain medication as well through the IV, and that I had a catheter in.

I would love to say at this point I went back to sleep and slept all night but it didn't happen. I instead proceeded to feel VERY wired and woke up every hour on the hour until 6am the next morning. Throughout the night I had a heavy feeling in my chest and pain in my ribs and neck like I had been hit by a truck. The Morphine may have taken off the edge but I was never without some form of pain or discomfort even when I told them as much. I'm not big on pain meds so that's not a huge deal to me but the minute I said "ALOT of discomfort" they seemed to ignore me. I guess all that was from the carbon dioxide they fill your chest cavity with while doing the surgery. LOVELY stuff let me tell you. Ugh.