Friday, January 21, 2005

Here Goes... Everything

Well day 7 of being on the alpha blocker and I really can't complain too much. Most of the side effects went away about two days ago. I still have a dry mouth and stuffy nose every morning when I wake up and a headache everyday but they’re all small things. Much better than I expected before I started the Doxazosin. My blood pressure has been staying pretty steady under 100/60 and usually around 97/54 most times. Of course, today I have dizziness and feel like I might actually pass out but I think that's because I actually have things I need to get done today. LOL. I'm up to 3mg a day now and I’ve also noticed that I’m VERY irritable right now. It’s ugly I tell you. No clue why that has happened or even whether it’s a side effect of the meds or something else.

Lil Man has done better than I could have ever imagined with weaning. I am so happy and it definately traumatized ME more than him. :) He still asks to snuggle and hold "boob boob" and even tries to latch on every now and then but he goes to sleep at night okay. Still refuses to nap though making both of us very tired by the end of the day. I feel so bad for him as he walks around in a haze from 3pm on. I’m so proud of him though.

Only a few more days until we leave for Tampa. I’m so unbelieveably nervous and it was made worse today when I realized we never went to a Notary Public to get my Living Will, Will, or consent forms for the kids done. Such an important thing how could I forget? :( Now everything is left up to The Fates. Again I have failed.

Everything is almost taken care of for the trip or at least soon to be taken care of.

I sent Dr. BC an email the other night with my blood pressure and side effect log so he would know what was going on. I’ve found that you have much better luck of reaching an actual doctor quicker if you email them. Sad isn’t it? Anyway- he emailed me back and said to stick with 2mg a day (even though I went up to 3mg a day almost three days ago) and then changed his mind and said stay with 3mg. I also let him know that Dr. Wells wanted him to be sure to do a biopsy of the liver while he was doing my surgery. I didn’t ask why but I’m sure it’s so they can test the tumors in my liver to make sure they are medullary for the study coming up.

I sent Dr. Wells an email last night asking him if me joining the study later was an option. The way everything has been going I just don’t know how we are going to do it. Money is tight, I don’t have any family to help, and I don’t seem to have enough friends to help either. I told him that I am not giving up my spot in the study and if I can’t join later then I will figure out something but I had to ask. I also let him know I wasn’t trying to be ungrateful or anything else.

He called today to talk to me and we had a glimmer of hope for a minute when he said they might let me just keep Lil Man in the room with me. He called and they said “no” though so that was a little deflating. He said he had some more ideas though and he would get back to me on Monday. He said that they are starting with 8 people in this study and then if the results are good from them then that will lead to other studies in other places with more people. He told me that he wants me to stay one of the first 8 though and thinks it’s important with how much my cancer has already spread.

For the first time I am actually afraid of the cancer and what it might/can do. I think sometimes I’ve taken too much comfort in the fact that it’s “slow moving” or that other people have it in more important places and are still alive. I just don’t know how to make it all real in my own mind. Luckily I have Dr. Wells looking out for me though and he feels that it’s important for me to be in this study which reminds me that it’s important. I am forever thankful for Mary who led me to him in the first place. :)

Well unless something happens between now and my surgery on Tuesday, this will be my last update for awhile. I’m not sure when I will get back online again to update. From what I hear it’s going to be a rough week or two. Thank you to everyone who has kept us in their thoughts and prayers. They are greatly appreciated.

It's weird to think that these are my last days of being surgery free. From here on out surgeries will be the norm for me and someday I'll look back and wonder what the big deal with that first one was. I hope to “see” you all soon and if by chance I don’t then I would like to end my blog with this…

Woo Hooooooooooo what a ride! ;)

Tuesday, January 18, 2005

Day Four of Doxazosin and Weaning

Not sure if I should consider today better or not. I'm not having difficulty breathing or chest tightness today so that much is good. I woke up with the dry mouth, stuffy nose, dizziness, and a migraine from Hades. It was awful. Luckily it was partially caused by lack of caffiene over the past two days so once I got some in me it eased up some. Not much but some is better than nothing and I'll take it! ;)

We made it through last night okay. My oldest was a big help all weekend and I have promised to try to convince Vin to let him attend spring football at school so he can be on the high school football team in the fall.. :) It was nice having the kiddo come through me this time and I greatly appreciate it. I don't know how I would have done it without him to be honest. As for Sis, I'm just so disappointed in her behavior this weekend. Words can not even express the hurt I'm feeling.

Lil Man did good with the weaning yesterday and didn't even try to nurse at bedtime. Just asked to "hold it", snuggled up for a bit, and then rolled over and went to sleep. Same thing when he woke up this morning and he hasn't been hounding me today to nurse at all. I am so thankful it brings tears that this is going easier than I thought it would. It seems the only one who has ended up traumatized from this is ME. LOL. We're not out of the woods yet but at least he seems to be okay with it. We're going to pick him up his special cup tonight as part of his reward for doing so well. The only downside to all this is that he's now a 2 year old with a pacifier and I hate seeing that thing in his mouth but I know he needs something for comfort right now.

Tonight will be the start of me taking three pills a day so we will see where this leads to. Only about 7 more days until the surgery. I'm so nervous at this point that sometimes I feel sick because of it. I just never thought I would be going through stuff like this. These are things you hear about other people going through. I don't think you can ever prepare for something like this. I mean, if I had just been told I had cancer and it had spread I would have considered it dumb luck and been mad but a hereditary gene mutation that my kids also have as well?? UNREAL! I am also still very angry that because one woman couldn't THINK before she had sex or at least get the name of the guy she had sex with now me and my children have to be hit with this and no history to help us get through. Again, thanks for NOTHING egg donor!

I am just very thankful that this cancer is slow moving, that I'm one of the rare ones to have low blood pressure even with pheos, that we found out in time to make the kids' lives easier, and that I have a good chance of seeing my children grow up. So many horrible things could have happened but in the midst of all this awful stuff I have been gifted with so much and I am so thankful for it.

Monday, January 17, 2005

Alpha Blockers and Toddler Weaning

This is day three of taking the alpha blocker (Doxazosin). Not as bad as I expected but not a picnic either. Started my first dose on Friday night w/one 1mg pill before bed. Woke up on Saturday morning a little dizzy, nauseated, tired but otherwise okay. TRIED to take it easy in hopes I wouldn't pass out. My oldest son was a huge help throughout the day while my daughter was absolutely horrible. That did not make me happy! She ended up getting all her toys packed up and taken away. NOT what I needed to deal with.

Saturday was also the first day of weaning for my toddler from breastfeeding. I wish I would have weaned him slowly and sooner. I just didn't know how and I was weak. I should have been stronger for his sake and I feel like the worst mother in the world right now. Friday night I had nursed him to sleep, held him, and cried (as in I cried) for a little bit before I went and took my first alpha blocker. He tossed and turned throughout the night but did fairly well. Saturday was so hard because he kept trying to nurse and I had to keep telling him we couldn't. I told him that they were broke, they would make him sick, that mama couldn't nurse... all of it broke his heart. I held him throughout the day and tried to get him to cuddle and nap to no avail. He finally cried one last time, curled up with me, and fell asleep out of pure exhaustion around 7:30pm. He tossed and turned throughout the night but slept until 8:30a on Sunday morning. Saturday night I took another 1mg pill and went to bed.

Woke up Sunday morning with the little guy and was feeling a little more dizzy, nauseated, stuffy nose, dry mouth, some blurry vision, and had this foggy feeling. I was also just so stinking tired. Still better than I had expected so I was happy. My oldest helped me out again throughout the day and I tried just to relax and not do much. Of course, my daughter decided to be a royal pain and I ended up having to clear everything but her bed out of her room, move her dresser into my room, and rearrange my bedroom to fit everything. Not something you should be doing while on a new medication but my daughter doesn't seem to care about that fact. I was so mad at her!! Later on in the day I started getting the feeling that my heart was pounding but whenever I checked my pulse it was normal.

Lil Man had a really rough day with the weaning on Sunday. He refused to take a nap and was just all around grouchy. I can't say I blame the poor thing. He kept trying to nurse and begging me to allow him to have "boob boob". At one point he said "Pwease mommy I boob boob? I wuv boob boob it make better pwease?". I just wanted to die right then and there. :( I held him alot and tried to keep his mind on other things. I even told him that he was doing so good and I was so proud of him. I told him that we would get him a special nap and nigh night cup when daddy gets back home (Vinny spent the weekend at his mother's) and also a special gift for doing so good. He fell asleep around 8:30pm and slept a little better throughout the night. I took two pills as per the instructions and went to bed around 11:30p.

That brings us to today. Woke up this morning at 10:30 (I NEVER sleep that late) feeling even more dizzy, only slightly nauseated, tired, dry mouth, had a stuffy nose last night throughout the night, that foggy feeling is still there, vision is kinda blurry off and on, and today I get some chest tightness and trouble catching my breath thrown in as well. Still have that heart racing even though my pulse is normal everytime I check.

I decided to look over the brochure they give you with the medication and noticed that I've had EVERY possible side effect they list so far. Greattttt. LOL. Of course, then there is the "CHECK WITH YOUR DOCTOR AS SOON AS POSSIBLE if you experience" side effects and I noticed that the blurry vision and pounding heart thing is under that. Well it got even better because then I read the "CONTACT YOUR DOCTOR IMMEDIATELY if you experience" side effects and the difficulty breathing and chest tightness is under there. Lovely. I called the only number I have for Dr. Carter just to find out that the office is closed today so that did me no good at all.

I broke down and called Dr. L's nurse and left a message for her to call me. She called about a half hour later and I told her what is going on. I let her know I'm not worried as in I feel the need to rush to the ER but I wanted to make sure someone knew what was going on. Just in case you know? She said she would page Dr. L, talk to her, and then call me back. An hour later B called me back and said that Dr L says to call the doctor who prescribed the medication because she doesn't feel comfortable saying anything when SHE didn't prescribe it. *eyeroll* I informed B that I TRIED to call Dr. BC's office and it is closed today. The only thing it said for me to do was call 911 if this was an emergency or talk to the doctor on call which would do me no good because 1- he's in Tampa and 2- he didn't prescribe this to me either. B said she would call Dr. L back and let her know that and see if she had any suggestions. I'm going to go over and let my neighbor know what is going on just in case as well. I have three kids to think about so I'm not taking any chances.

So it looks like I'm on my own and lets hope this doesn't get ugly.

As for Lil Man and weaning today, he's doing great. He asked to cuddle and "hold them" earlier and I let him. He nuzzled a little but didn't try to latch on. I'm thankfully not swollen today like I was yesterday so I'm not in pain from a filled up chest. LOL. I'm sure he probably won't nap again today and it will be a long evening but I'm so proud of how well he is doing. I've been making sure he has plenty to drink because although nursing was more of a comfort than anything it still provided at least some of his liquid/hydrating needs and I don't want him dehydrating because of all this.

Today I take a total of two pills again and then tomorrow it will be one pill in the morning and two at bedtime bringing me up to three pills a day. It will stay that way until I go for the surgery. Hopefully I'm just having all these side effects because my body is adjusting and it will all go away. I figure I'm not having any swelling (no my chest does NOT count), no REAL trouble breathing or pain from chest tightness, and I haven't passed out so I am doing good! :D

Of course, my daughter is on day three of being her absolute worst and it is honestly wearing on me. It hurts knowing that when I really need my family (in this house and out of it) and people that no one can come through for me. Oh and if you noticed I didn't talk about Vinny while describing the weekend... yeah well there's reason for that too. This all just makes me not want to be there for anyone next time they need me. It must be nice for everyone to know that no matter what I will be there to take care of everything but when I need some of that back they all scatter like rats. My mother is beyond worthless, my brothers are a waste of flesh, and my sister is an ignorant ass right now. My husband isn't ranking very high up on the totem pole right now either and a few people I THOUGHT were friends have shown their true stripes as well. Niceeeee.

Sunday, January 16, 2005

A lady on one of the websites I post on had started a thread about how she's 30 and really doesn't know who she is. It got me to thinking and I finally went back and shared what's posted below. I'm sharing it here too because now that I read it over again I really like what I said. LOL. Hey, you have to save the good stuff so you still look smart during the times you say dumb stuff. ;) Here is what I said...

"It's funny, I was finally getting to the point where I knew who I was and who I was becoming. I was so excited and loved all the new things I was finding out about myself. Then this cancer/men2a crap hit and I spiraled. Now I have no clue who the hell I am. I know I'm not the same person and I know that I will never be that person I was becoming but I have no clue who I am NOW. I've felt so lost lately and it was honestly starting to get depressing. Especially since I turn 30 in March and have been so excited about that. I thought I'd know who I was and turn 30 and just start this great journey in my life.Now... ugh, stop the damn ride I want off!!! LOL

Seriously though, this has taught me that life is too short to worry about the little things. As long as I'm changing and learning it means I'm alive and being alive is so much more important than knowing exactly who I am. Besides, aren't the best books the ones where you think you know where the story is going and then suddenly it knocks you off your feet because it changes and goes a totally different way??

I want to be a great book when I grow up. I hope that right now I AM that wonderful work in progress and I bet you are too. "

This is the first time I've thought of things like that. I can honestly say though that I really do want to be a great book one day. I want my life to be a story that once people have "read" it they sit back and just say "WOW" and then tell a friend about it.

A girl on that same site had this in her signature for awhile. I want to add it to my blogs so I can look at it anytime I start forgetting how to live. :)

"Life should not be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, red wine in the other, body thoroughly used up, totally worn out and screaming ~ "WOO HOO what a ride!"

(Thank you for finding that for me Amey. ;) )

Thursday, January 13, 2005

Let The Games Begin!!

Time for an update. Bet you were all on the edge of your seats this whole time weren't you? ;)

I had emailed Dr. Wells with some questions and also to let him know I have a surgery date. He emailed me back today telling me that I would start the study the second or third week of February which is fine and may actually work as far as taking Lil Man with me goes. He also said that the drug company provides money for housing and meal costs during the length of the study so I had to email him back and basically ask him what he meant. If I can't get help with all this gas I am going to be using up on the way back and forth for 6 weeks then there is no way I can go. We can NOT afford that kind of expense.

I'm sure the drug company realizes that $1300 is not enough for a person or people to live off of for two months either. I'm talking about if they stay there in Durham. You have to pay two months worth of rent, a deposit, get utilities turned on, and everything else PLUS pay for neccessities and food. Even if you stay in a hotel.. well to be honest I don't see HOW you would stay in a hotel the whole 8 weeks! So what this is is people are suppose to stop their lives, be in this study, have $1300 to pay for stuff, foot the bill for all the rest, PLUS either they or their insurance company has to pay for some of the bloodwork, and all this just for the HOPE that this drug works. I mean sure, it might mean a cure. I could be cured of the cancer when this is all over but it's hard to explain to your family that they may have to eat ramen noodles and drink nothing but water to pay for you to drive back and forth for 6 weeks because MAYBE this will work.

Anyway- we'll see what he says when he emails or calls back.

Dr BC's office called and they have called in the alpha blocker to the pharmacy. They want me to start it tonight. I'm actually going to start it tomorrow night for a few reasons. One is so that Lil Man has one last night of nursing before I have to cut him off cold turkey. :( I feel like the worst mother in the world because I didn't have the strength to wean him slowly. Now I have to listen to him cry because he doesn't understand why he can't nurse. Another reason is because it will be just Lil Man and I at home tomorrow and I would rather hold off until more people are here in the house. I just think it's safer that way.

The doctor's office also informed me that I need to get a blood pressure monitor so I can log my blood pressure. I could just go to Walmart everyday but if I can't drive then that scratches that. So that's another $50 at least we are going to have to shell out. *sigh* It's no biggie though because I really do need to get one anyway. I'm going to need to monitor both mine and the kids' blood pressure every so often and it will just be easier having a monitor at home. So although it sucks we have to spend the money right now it's needed in the end anyway. :)

So let the games begin! I'm debating on whether or not I'm going to let the kids take pics of me with my tongue sticking out everytime I pass out to post on the net or not just for giggles. Hey... if you can't laugh at yourself then who can you laugh at right? ;) Okay besides the chic who comes out of the bathroom with her dress tucked into her pantyhose. Seriously though, no way are you people getting ahold of pics like that! I don't care how much you beg or try to pay me... well maybe paying me would work but that is IT!!! LOL j/k.

Monday, January 10, 2005

Letting The Emotions Flow

This is my emotional post. I've tried not to do many of these in this blog because I wanted it to stay fairly factual in case anyone new to MEN2a came across it. I think I've earned this post though and hope no one minds.

Since this all started in October this truly has been like one long, scary, and hellish nightmare rollercoaster. I HATE rollercoasters. Stinking things have always made me sick! Before my very first biopsy results came back abnormal I always just thought I had a goiter in my throat. No big deal, they would remove it, and I would go on with my life. NOTHING could have prepared me for what this all led to. I'd never heard of MEN2a, medullary thyroid cancer, pheochromocytomas, or hyperparathyroidism before. I didn't know such a thing as a RET gene existed or that there was such a thing as cancer causing gene mutations. Talk about a crash course in reality!

Everyone tells me that they can't believe how strong I've been and how I'm handling everything. A dear friend (whom I have missed dearly over the years) told me that I have "spunk". On the outside yes, I've been holding it together better than I ever thought I would. On the inside though I've just been wanting to curl up into a ball the whole time.

So many questions that run through my head and no answers to any of them. I have layed in bed several nights asking any and all Gods/Goddesses why they hate me and why they would do this to my children. You just get to the point where you HAVE to ask that question. I know I'm not hated but you can't help but wonder what you did that was so horrible to deserve all this. I TRY to keep my chin up and anytime I really get down I remember that it truly could be alot worse. My cancer could have spread to an inoperable area. It could have been a fast moving cancer leaving me only months left to live. My children could have had leukemia or any number of other truly devastating illnesses.

Since we found this early their lives will be harder than most BUT they will now have a chance to be pretty close to normal. I just hate that they now have to decide whether or not they ever want to have children of their own because they could get this too. :( I'm not one of those people who worries about whether or not I will have grandchildren someday but it bothers me now that instead of my daughter wanting to be a mom and raise her children, she has to honestly think about whether or not she SHOULD be a mom. Any person my children marry will have to know ahead of time that they may never have children of their own. How awful is that? Isn't it hard enough in this day and age to find your life partner without adding to it having to tell someone you may never have children with them? *sigh*

Sometimes I wonder if this is all just a cruel joke. Like the tests were all wrong because none of us are really sick. I have alot of symptoms from the things wrong with me but they are all little things so although they are aggrivating they don't control my life. The kids are still the healthiest kids I've ever known.

And by the way, knocking on wood everytime you say that does NOT help. I spent 13 years knocking on wood everytime I said how happy I was my kids were healthy and at times almost too healthy. Now look where it got us. :( I'm not even 30 years old yet for crying out loud. You're suppose to have organs removed and be on medications and have cancer when you are older...not young. I KNOW it happens everyday to children, teens, and young adults but it just plain sucks! Older people don't deserve any of this either but had I had a charmed life or a longer life before this all came about I wouldn't feel so bitter because I had lived. The worst thing I was looking for a few months ago was menopause in about 10 years and I was actually looking forward to that one! Now I feel like a poster child for MEN2a.

This surgery scares the hell out of me. Things have just gone so wrong so far I can't help but wonder if I'm even suppose to make it through this surgery. Our luck is so bad already. If I don't make it through then my children will be seperated and most likely never see each other again. My son would go to his worthless vagabond donor and live the same life as him. The person my son can be would be lost and crushed under the life that sorry SOB lives. My daughter would go to her worthless irresponsible greedy ignorant donor. Oh he'd happily take her because it would mean he would get another social security check for yet another child of his whose mother died (his son's mother died a few years ago from a spider bite). Emotionally though my daughter would be left to her own devices. Just one of his current crowd with the current sucker du joir. My youngest son would stay with Vinny and be raised by him. A court wouldn't care that this is all these children know. A judge wouldn't care that ripping the three of them apart would destroy them.

Besides, neither of the donors would care about getting Big B and Sis the best possible care for their MEN2a. If it cost money, they wouldn't get it. All of this would happen because I have failed as a mother to them. By staying in my little caccoon thinking nothing bad would ever happen I have robbed them of a security that they deserved. "I'm sorry" just isn't going to cut it this time.

Yet another thing that hurts right now is that weaning with Lil Man hasn't been going well at all. I've been trying but we're just getting nowhere. I wanted so badly to wean him gently. Instead I have no choice now but to take nursing away from him full force and listen to his cries and see the confusion in his eyes. Again, I have failed one of my children. :( I can't continue to nurse him while I'm on the alpha blocker the next few weeks. By doing so I could pass the medication on to him and it could shut down HIS adrenal function. That's not even remotely a risk worth taking. Then of course you have the fact that he is going to have to spend three nights away from me when I have the surgery. We have coslept his entire life and I have always been right there by his side. I just hope Vin has patience with him and can be understanding.

I'm excited about the upcoming study at Duke University while still wondering what I'm going to do about Lil Man. As I posted before, I had tried to arrange taking Lil Man with me the first two weeks and at this point two people have had to back out and the two people who CAN still help me won't be able to help until after February 11th. So I'm still trying to figure out what to do about the (tenatively) 4th through the 11th. I had asked my sister...practically begged her actually if she could help. That was in an email 5 days ago and so far I haven't received any reply from her. That one hurts more than anything. Even a "I'm sorry Jo but I can't help" would have been fine but to totally ignore me altogether. And I know I'm being ignored because she usually calls about twice a week and hasn't since I told her the email was waiting for her. :(

I've made up my Living Will, a Georgia Living Will, a Florida Living Will (I'm covering ALL bases just in case), Authorization For Minor's Treatment for Big B and Sis so Vin can get them treated if need be, and my Last Will and Testament. Not that it will do any good if Big B or Sis's donors decide to fight it but it's better than nothing. I've also left certain things to the kids that I know will mean alot to them personally and Vinny knows what I want done with my remains. I'm hoping none of this is needed because I have no insurance on myself and I would really like do have something special done with my remains. I don't want Vinny to be burdened financially with it all. The joys of nobody wanting to insure you once you have cancer. *sigh.

So anyway- I'm strong because I have to be. There is no choice. If I start feeling sorry for myself or have a breakdown who will be left to make sure the kids get what they need? Who will there be to show them how to be strong? When you become a mom it becomes your job to shield the ones you love from the pain you really feel. They have enough going on with themselves without me crying and falling apart. Vin has enough to deal with without dealing with a wife who can't carry her part of the weight.

Don't tell me I'm strong because I'm really and truly not. Just tell me I'm being what a mom is suppose to be and that will help heal my heart. ;)
FINALLY A Surgery Date!

As of this morning the scheduler from H. Lee Moffit hadn't called me yet so I took matters into my own hands. :) I emailed Dr. BC and asked him some questions as well as told him no one had called me yet. To make things easier I will just copy and paste my email and his return email.


"Hello, I really don't have any contact numbers for you but I had a few questions to ask about the adrenalectomy if you don't mind.

When I saw you in December you said I would need a medicalert bracelet after the surgery (because we were doing an open adrenalectomy). If the adrenal sparing surgery is successful will I still need to get a medicalert bracelet? I'm just trying to plan ahead is all.

Will I need to be on any medications after the surgery? You had said before I would be on I think it was two medications to take the place of the adrenal glands function but again, if the sparing surgery is successful will I need to be on anything at all?

I'm still awaiting a call from someone in scheduling to set the surgery date so hopefully they will call today. If they don't is there a number I can call them at to try to speed things along?

Dr. Wells called me on Sunday and we're looking at me joining the study about 7-10 days after the surgery if everything is healing correctly. Thank you again for taking this on and for agreeing to do the surgery. I have no worries that I will be in good hands."

His reply-

"The success rate of the adrenal sparing is variable. As I mentioned on the phone, I have not attempted this with the laparoscope, only the open technique. I would plan on needing to be on cortisol replacement and florinef replacement post, and obtaining a medic alert bracelet. If the sparing technique is successful, you may not need replacement, but will likely require supplemental cortisol under severe physiologic stress (such as a car accident with injury) so the medic alert bracelet would be important.I will check on the scheduling. BC"

Only down side is I don't remember him saying he had never tried this laparoscopic before. LOL. Can you say "Ima Guinea Pig?". ;) It's okay though. So now I'm back to having to get a medicalert bracelet and I will have to carry an emergency kit/have one on hand in case I need a cortisol injection. Vinny is also going to have to learn (as am I) how to inject me in case of an emergency. FUN FUN FUN!! And here I thought my life was boring.

Anyway- Leah from scheduling called me back and we FINALLY have a surgery date!!! I have an appointment with the Anesthesiologist on Monday, January 24th at 3:30pm which gives us plenty of time to drive down there during the day that Monday. He will go over how the alpha blocker is doing, check over my history, and just overall make sure I'm okay for surgery. Then I will go in on TUESDAY, JANUARY 25TH AT 7:30AM for the surgery. Of course, we will have to be there at 5:30am to get checked in and everything.

I am so incredibly nervous. So many thoughts going through my head but I will make a seperate entry for that.

I called Dr. L's office this morning trying to get ahold of her nurse so I could get copies of the kids' test results. Of course, they said they would call me back blah blah blah. Basically if I don't get a call by this afternoon I will be showing up in the office tomorrow. From MY "standpoint" they need to quit being a pain in my butt!

So it looks like I should be entering the study at Duke by the end of the first week of February. Now the hard part- finding someone/people to help with Lil Man until the 11th when the only two people who can help me out will be able to come up. Hmmmmm maybe I should start a "Buy Jo A Nanny" fund. You think? ;) I'm joking... honest. I think winning the jackpot would make more sense. LMAO.

Friday, January 07, 2005

Oh Look, Another Loop In The Ride!

Dr Wells called this morning and asked if Dr BC had contacted me yet. I told him no he hadn't and he started telling me that we really need to get this moving because they've got a spot they are holding for me that they can push back some but they are starting to get alot of calls about this study and people who need help. In other words, if this doesn't happen soon I am going to be out of the study is what I think he was trying to say.

I got somewhat upset and couldn't help but think that he was the one who told me to look into going to Duke instead and that I wouldn't need any scans if I went there. Had I known differently I would have went ahead and gone to Tampa to get the scans they scheduled me for last month so that no matter what I could have surgery within the next few weeks. I told him I'm just trying to get this done and over with too and I don't care WHO does it as long as it's done because it's important to me to be in the study. He said he was going to try calling Dr BC again today. I have a feeling this is going to all go to hell in a handbasket.

If anything else happens today I'll update this again.

Afternoon- Dr BC called me a few hours ago and talked to me about the surgery. He said we are going for the adrenal sparing surgery because at my age (this time meaning YOUNG lol)they like to try it as an option. He filled me in on the fact that of course it's a long surgery, there might be problems/complications, they may end up having to take all of both adrenal glands, and so on. I told him I've researched all of this and he's not telling me anything I don't already know. I also told him I'm ready to just get this over with. He was funny because he was sooooo excited that Dr. Wells had contacted him. He says Dr Wells is one of his heroes and he sounded almost giddy. :D

We will be starting me on the alph blocker here in a few days and I will have to take that for the next few weeks. That is the medication that will most likely at some point and time make me pass out if I move too fast. My neighbor, Kaye, has said she will check on Lil Man and I throughout the day to make sure everything is okay so that is one less thing to worry about. I just have to remember not to move too quickly.

Dr. BC said we will do the surgery around the end of the month and someone from scheduling is suppose to call me to set up my surgery date. By the sounds of it, it will be on a Tuesday and they will have me come up on the Monday right before to see the Anesthesiologist to check how I'm doing on the alpha blocker. Then that night I will check into the ICU, Tuesday morning they will start the surgery, I will be out by Tuesday afternoon, and then spend another most likely two days in ICU while my levels adjust. Then we come home and I spend a week recovering before taking off to Duke University for the study.

It's looking like Vinny gets a wife in ICU for his birthday. Just what he wanted I'm sure. LOL.

I emailed Dr. L asking her for copies of the rest of the childrens' blood test results. She emailed me back saying "we are done with the labs for the kids from our standpoint. jl". Well that's nice and all but they have only given ME the results from the genetic testing so from MY standpoint I am still owed calcitonin test results, catholimines, 24 hour urine test results, and everything else. Don't give me this "from our standpoint" crap!! So I informed her that I want copies of all of those. If her nurse doesn't call me here soon I'm calling first thing on Monday and telling them to get copies ready because I'm coming for them. Maybe I just took the way she "said" things wrong. After all, I am on edge right now.

As for the Octreotide scan- Dr. BC says I should get one from an academic standpoint but as far as for this surgery goes I don't need it. He said it won't alter or change anything about the surgery itself. I have MEN2a, I have pheochromocytomas, they are bilateral, they are on both glands. He says all he needs to know. :)

So now I'm just waiting on someone to call me and tell me when to be there for my surgery. Only problem left is to find people to help the first two weeks of the study. Wish me luck!

Thursday, January 06, 2005

I HATE Rollercoasters!

And yet it seems that is exactly what my life has become. *sigh*

Starting on either Sunday or Monday things just started going all to pot on me. I sent out an email checking with the girls who were going to help me out during testing and the study just to see what dates they had decided to take. By the time I received all emails back two people had to back out and another can't do it during a certain week which may be the most needed time of all. I'm not mad, I mean these girls were volunteering their time and offering to help me so how can you be mad? It was just a really hard blow because it's so close now and here I am back to square one trying to figure out what to do on top of everything else. I finally emailed my sister practically begging for help (NOT money btw) but have yet to hear from her. :(

So then I get a call on Tuesday from Dr. Olson's office telling me that they want me there for the scans on Monday and Tuesday (January 10 and 11) with a followup and pre-op with Dr. Olson on the 12th. Surgery is/was set for January 20th. I emailed the girl who had offered to help me out with/during things like that and find out she messed her back up and basically feels like hell so she can't help (If you read this, feel better soon girl and take better care of yourself woman!). There is NO ONE to help next week so I can get these scans done plus money is pretty tight around here and HOW in the heck are we going to afford a three night hotel stay, food, and gas next week PLUS an almost week long stay, plus food, plus gas the very next week after that???

I called Dr. Olson's office back on Wednesday to ask if maybe we couldn't just do the scans, visit, and surgery all in the same week so we can all just drive up as a family and take care of it in one trip. Of course, the answer was "no" but I thought I would try. The nurse said that if they find any surprises in the scans then I would need more testing and they would hate to have to cancel the surgery. Ummmmm it doesn't matter what they find on the scans because even if there ARE any surprises I can't stay any longer or make ANOTHER trip up there. It's a moot point.

I was in tears and about ready to just cancel all treatment for myself for awhile. This shouldn't be so hard and I've never felt so broken, beaten, or hopeless in my life.

A few minutes later Dr. Wells called to see how I was doing and I was honest with him. I told him that things weren't going so well and that things were falling apart. He asked me if it would be easier to have the surgery done in Tampa at Moffitt like I was originally going to. I told him time and moneywise that YES it would be easier but I just want things done!! He told me that he would call Dr. BC at Moffitt and see what he could do. About a half hour later he called me again and said that Dr. BC would be more than happy to do the adrenal sparing surgery and get this going. I was so happy I started to cry!! Dr Wells said he was going to call Dr BC again and see if we could get a timeframe here so we could decide when I'm entering the study and so on. Told me not to worry that I would be in the study and let's just get this done so I can get better.

I felt so much relief and hope things work out now. Will update more when I find out more.

As for the kids, nothing new going on with them. Again it's a matter of hurry up and wait. Things were sooooo important and needed to get done soooooo badly on all of us yet now because of either money or laziness things are at a standstill. I really hate that sick/ill people have to do ALL the work when it comes to their care. It shouldn't be like that. Doctors should coordinate and try to help you out. I mean, WE are not the ones who have gone to medical school and know what is suppose to be done.

Some people say that the internet at times holds a little too much information but for me, if it hadn't of been for the internet I wouldn't know half of what I know about MEN2a or the other stuff and would just be sitting here not doing anything because I'd trust my doctors to. At this point, I think I know more about all this than my endocrinologist and there hasn't been anything really that they have told me that I didn't already in some aspect know.

Hell, maybe when this is all done I should PRINT UP a degree and hang in on my wall in a frame! ;)