Thursday, March 24, 2005

Well I finally got my calcitonin results back in a half azzed way. Dr L's nurse called me and said my results came back "fine". I asked her what the hell "fine" means considering last time they were over 24,000!! She goes "Oh I don't know I guess that means they haven't really changed much". Ummmmm could you LOOK possibly? Come to find out my levels are at 16,090 so basically what they were in October.

Of course, they will not go down until I have at least the thyroidectomy so I wasn't expecting that. I'm just wondering how they supposedly started at 16,000 then went to 24,000 and then went back to 16,000. In other words- someone is full of crap! I'm thinking they screwed up the results the second time and from now on NONE of my tests will go through Quest Laboratories in Atlanta! NONE!! They are the most incompetant bunch of people I have ever seen in my life!

So the calcitonin is holding steady which is good. It means nothing new has started but again it does mean that my chances of the cancer not spreading past the thyroid are slim to none. That's okay though. ;)

Wednesday, March 23, 2005

They're Going To Film Our Story

I got a call from the kids' surgeon asking how we were and if there were any questions I might have before the surgery. I told him "no" and that we were pretty well covered. So then he asked ME a question. He was approached by some high ups at the hospital and asked if he had any rare or unusual cases. He immediately thought of us. The hospital is interested in learning more about our story/MEN2a.

They are going to film us starting the morning of the surgery with an interview with Sis before she has her surgery. Then they will film some of the surgery from inside the operating room, interview Big B (if he lets them. He has told me he wants nothing to do with any of this. :( ), and then interview me while the surgeries are going on. Then they will talk about MEN2a some more and view the kids after the surgeries.

The girl, Samantha, said she is going mostly for video footage because she thinks it would make much more of an impact seeing real people and how it affects them.

I'm not sure if this is going to be on local news in Atlanta or used for footage in a medical show but either way it's exciting to me because we will be getting the word out about this. I'm personally so excited because if seeing this gets even just ONE person to get checked and saves one person from having to go through the hell we have the last 6 months then I will have done what I feel is my job.

Honestly, I could care less about being on tv or news or anything else. Heck, I've already been on the news three times so pppfffffttttt on that. Anyway- I just care that my family is going to be able to spread the word about this. This is so exciting and I really feel like we can make a difference!!

Tuesday, March 22, 2005

The Kids' New General Practioner

I took the kids to their new GP today so we could get established there before the thyroidectomies. She seems pretty nice. She is hard to understand (VERY thick Cuban or Puerto Rican accent) but still nice and very open to things. She only asked me a few questions about us not vaxing Lil Man and then dropped it. I liked that VERY much!

All the kids are healthy, good weights, blood pressure is good, and the doctor even commented that they must be so healthy because they were breastfed. BIG BROWNIE POINTS on that one! :D

She's never had any MEN2a patients but her and her husband (the other doctor in the practice) HAVE studied it and try to keep up to date on it and are more than willing to learn. That to me is almost more important than finding a doctor who already knows all about it. This way they aren't so stuck in their ways and are willing to listen to me.

She also isn't big on medicating or diagnosing kids with ADHD or bipolar which makes me happy and agreed with me to wait until Sis is on the Synthroid for a bit before we start looking into bipolar. So I think she will work just fine and hopefully I won't have to fire her later. LOL. I'm getting tired of firing people to be honest.

I was suppose to have my appointment with Dr L tomorrow but I'm not going to be able to make it so I'll just have to reschedule for another time. Still waiting on the calcitonin results. Just wish they would get back already.

Monday, March 21, 2005

Octreotide Scan and Biopsy Test Results Are Back!!!

I just talked to the doctor's assistant on the phone and she gave me my test results. Here they are...

The liver biopsy- was NEGATIVE!!! The tumors in my liver are BENIGN!!! That's right the cancer has NOT spread to my liver!!!! :D

The octreotide scan- showed uptake ONLY in my thyroid meaning it could not find tumors from the medullary cancer anywhere else in my body!! NONE!! The other tumors in my body are most likely benign as well.

This far along it is too much to hope that some of the cancer hasn't entered my body elsewhere especially with the bone pain I'm okay with that. After thinking it was already taking over my liver for 6 months I can deal with knowing it will get me later on. I've already made my peace with it and already been through the sorrow over it so it's easy from here on out. ;)

We will still need to remove the tumors just the same as before but now I know I have more time with my kids. Once we remove the cancer from my thyroid and parathyroid then that big monster will be gone. I may never be totally free of this cancer but I'm not as far into the battle as we thought either and that's a good thing.

I'm in tears and cried the whole time I was talking to my friend Julie. LOL

I don't get this lucky. It just doesn't happen so I am so relieved I am honestly shaking. I honestly thought the results would come back very badly and had tried to prepare myself for that. I never even let myself hope for something like this.

Friday, March 18, 2005

Dr. L's nurse called me back late yesterday afternoon and said she wanted me to go to the walk in clinic to be checked. She said with my kidney problems in the past she didn't want to mess with this and knew how much I hate the ER so we would try this first. LOL.

They checked my urine and no signs of infection so the doctor just said it must be a BACKACHE caused by the liver biopsy, gave me Percocet and Flexeril and told me to come back in a week. *eyeroll*

In other words, no signs of infection, you have cancer anyway so just take these pain meds and go away. :( If all I had was a stinking backache I would have said "Hey I have a backache" and I would have put heat on it and stayed home! How does a backache hurt right across your kidneys AND around the right side as well? Am I missing something here? Is this some kind of new fangled backache I've missed out on the last few years? *sigh*

So I don't know what IS wrong with me now but I am glad there's no infection at this point. I DO know though that something is wrong in my kidney area. I've had over 50 kidney infections and it doesn't feel like one of those. I've also had pulled muscles and backaches over the years and this doesn't feel like that either and WHY would it show up two days after my liver biopsy? HOW does lying flat on my back for a liver biopsy cause a backache? Especially since it didn't show up for two days??

WHY is the medical profession so damn STUPID?? I'm going to make myself a shirt that says "No, Doc It's Okay If You're Stupid. I've Come To Expect It At This Point". Or maybe one that says "Why Do They Call Themselves "Medical PROFESSIONALS When There's Nothing Professional About Them?"

So now next week there are appointments on Tuesday, Wednesday, and Thursday. To be honest, I'm not even going to that stupid follow up on Thursday. I'll just talk to Dr. L and leave it at that.

If I get really sick though because they are ignoring something I'm suing their asses!! Shut up and let me dream dammit! ;)

I'll be offline for a few days. I feel awful and need to just lay in bed drugged up for awhile and hope I feel better come Monday. Keep your fingers crossed that there aren't any ER trips in the cards for me this weekend. I REALLY hate that place and don't like going there.

Thursday, March 17, 2005

Octreotide Scan, Liver Biopsy, Etc

Sorry, no catchy title I'm afraid. On Tuesday, March 8th I started my Octreotide scan at H. Lee Moffitt in Tampa, FL. I went in at 7am and had some blood drawn on the second floor and then went back down to Radiology on the first floor and checked in. I didn't have to wait very long and was back in Nuclear Medicine by 8am. The girl injected me with the dye and told me to not eat anything and come back at noon so we could start on the scan.

I drove around for awhile, drank lots of water to help flush my system, and just kind of window shopped until it was time to go back. A little before noon I checked back in and again was called back pretty quickly. They had me lay down on this long metal bed that slid halfway into a donut shaped thing with large metal "blocks" above and under me. I was able to watch the scan at first while they did my abdomen and freaked myself out a little because I kept thinking that everyplace that was lighting up must be the cancer. :) After calming myself down I enjoyed the peace and quiet for the hour and a half that the scan lasted. They did my abdomen, chest, neck, and head. When they were done they told me to come back tomorrow to finish up.

I arrived a little before 8am on March 9th and again went back quickly. This time I was there for three and a half hours getting various angles and scans done. I WISH I could have slept because I was exhausted from lack of sleep at this point. I hadn't taken any pain killers in days and that in part was reason why I wasn't sleeping. The time didn't go by too horribly slowly though and when it was done I went and picked up my two youngest kids from a friend's house and took them out for awhile.

For the liver biopsy I was told to arrive at 7:30am even though my biopsy wasn't until 9am. So I showed up like a good girl and then proceeded to be told that I still had to wait almost two hours. Luckily that isn't what happened and I think I only waited half an hour or so. A nurse took me back to a room that had an ultrasound machine set up in it and a tech who was making sure everything was ready. She explained to me that she would be handling my pain meds through an IV she was inserting. To be honest, I thought this was absurd because WHY would there be any reason or need for pain meds? LOL.

After the IV was in the doctors came in (two I had never seen before and honestly don't remember the names of) and the younger one explained to me that they were going to numb the area they would be inserting the needle into and taking cell samples from my liver as Dr. BC had requested. He said there could be some discomfort or pressure when the needle was inserted but there shouldn't be any real pain and it should go pretty quickly. He said if I needed pain meds for the discomfort to just let the nurse know. My famous last words were "I've given birth naturally three times without any pain meds I think I can handle this". I'm such a dork!

I had a moment of hope while they were trying to find the tumors because they could only find one. I don't think a person can help themselves but wish that it means the other tumors are gone but they assured me that wasn't the case and sometimes it's hard to find them on u/s. :( Oh well, even though hoping sucks sometimes it lets you know you're alive so yep... I'm still alive.

So they numbed the area and the first five times they inserted the needle were fine. Only felt a small amount of pressure but no big deal. Then after they took the needle out the fifth time I started having pain in my liver area. I told them it felt like someone was taking a high heeled shoe and grinding it into my liver over and over again. The nurse put some meds into the IV and it eased up a little so they did the sixth needle stick. As soon as he pulled the needle out again the pain got worse. I started saying "Oh, ow hey that hurts. Is that suppose to hurt? It's not uncomfortable anymore it HURTS". The doctor didn't know what to do because he said he'd never had this happen before. Great, new first for me again. LOL. The nurse gave me more pain meds and they waited a few minutes while letting the pathologist look at the slides to make sure they were getting what they needed. The pain got worse and the nurse gave me a different pain med in hopes that it would help but again it didn't even touch the pain.

Finally they said they had enough and we would stop there. The nurse told me that if I had any pain meds of my own I was welcome to take one. *laughing hard* It reminded me of the phrase "Smoke 'em if you got 'em!". :) So I took one of my Ultracets and just hoped the pain would ease up soon. I was then moved down to Recovery for four hours of observation. About half an hour after I got to Recovery it hurt to even breathe and I asked the nurse if I could have something to help the pain. Seriously, it only hurt when I breathed. It was the oddest thing! She said she would check and see and then never came back. Well I wasn't willing to have to spend more time in there so I just sucked it up after that and tried to ignore the pain.

After a little over three hours later they said I could go home so my friend picked me up, dropped me off at my car, and I drove back to her house. From there I picked up Lil Man and Sis and drove the 3 1/2 hours home. I was still in alot of pain but I just wanted to get home and get this all over with!!!

Once at home I took two of my Ultracet and just sat around for the rest of the night. It still hurt to breathe and sleeping was hard.

It hurt like that for two more days and then finally it just felt like a bruised liver and sore. Of course as that pain started easing up I started getting pain in my kidneys. It's now 5 days later and the pain is only getting worse. I've called the doctor and left a message but of course no call back and I have a feeling I won't get one until late today either. If nothing else I may go up to the ER at the OTHER hospital tonight and get checked. Probably another infection or kidney blockage with my luck. *sigh*

I've also been adjusting my steriods to see if I can handle a lower dose. Unfortunately, anything below 15mg of Prednisone seems to make me sick and the headaches start. Oh well it was worth a try though eh?

Tuesday, March 15, 2005

Took the kids to their appointment today with the doctor who is suppose to become their primary care physician. We got there early and sat around about 20 minutes before the girl at the reception desk informed me that the doctor just got called away for a c-section and I had to reschedule. It kind of ticked me off because I had to pull Big B out of school for this but I DO understand that crap happens. So they now have an appointment for March 22nd instead.

The only thing that did bother me was that I gave the receptionist the kids medical files to copy and when I was ready to leave I asked for them back and asked if she made copies to which she goes “Oh we usually only just need the shot records and not that other stuff”. I got kind of pissy and just told her straight “Two of my children have a genetic disorder that causes cancer. This is all their test results and everything else that you DO need if you expect to care for MY children!”. She looked at me and goes “Oh oh, well bring those back with you next time too okay?”. So basically if they DON’T make a copy of the kids’ test results I will be going somewhere else. I don’t have time for someone who doesn’t take this seriously and there is no room here for half assing things. I’ll no longer settle for anything other than great care for my children. ALL my children.

So we’ll see how next week goes. On the 23rd I have an appointment with Dr. L. I’m STILL waiting on my calcitonin test results. It’s been almost three weeks now so this is getting old. I don’t blame the office here, I blame Quest Laboratories for constantly screwing up and if they have messed up my test AGAIN then I’m going to talk to a lawyer. I’m not a sue happy person but this is just too many times for this crap and something has to be done. I’d settle for a nice slap on the hand by some kind of health board or something.

It’s getting closer and closer to the kids’ surgery date and I don’t know who is more nervous- me or them.

Wednesday, March 02, 2005

Kids Have A Surgery Date

Yesterday we made the trip up to Atlanta to see a pediatric surgeon about doing Big B and Sis's thyroidectomies. The trip went quickly, the kids all behaved on the way up, and we even arrived over an hour early. The only bad parts were that we had to wait over an hour in the waiting room and then over half an hour in the room itself. The doctor DID apologize though and said they were running behind.

The doctor, Dr. KG is a VERY nice man. It was so nice to FINALLY find a nice, intelligent, and caring doctor. He knew all about MEN2a and took the time to explain it in detail to the kids in terms they may understand better. One thing I really liked is his way of explaining MEN syndromes to them. He said it is "Multiple (meaning many or several) Endocrine (meaning your endocrine system *named some organs*) Neoplasia (which is cancer) so that means that it is a disorder that causes several cancers in glands in your endocrine system". He asked both kids if they had questions and then answered them and spent well over half an hour with us. He assumed from the beginning that I knew everything he talked about and would look at me every so often to make sure and once I nodded my head he would continue talking. He explained the surgery to them, what happens after, and why we are doing this. Just all around tried to make them comfortable and I greatly appreciated that.

I asked about having the surgeries on the same day and he said he would rather have them on two seperate days because then he is fresh for each surgery. I also asked about doing them over Spring Break so they wouldn't miss any school and when we went to schedule the surgeries we found that there is only one day that week he will be around for surgeries so he decided he will do both the same day so they don't have to wait. He was all about doing what was best for US. Kudos to Dr. L for the referral!

As we were scheduling he asked me "How are YOU feeling?". These days I wonder if doctors ask me that because I look like hell or what. LOL. I told him I'm doing alright just trying to get the right steriod dosage down. He told me to take care of myself and that if I have any questions feel free to email him. Again, very nice caring man. Two thumbs up from me to Dr. G.

So Big B and Sis are scheduled for surgery at Egleston Children's Hospital starting at 7:30am on March 30th. We decided Sise will go first because she is having some anxiety problems over this and I don't want her having to wait until Big B is done. So her surgery will start at 7:30 and last about 3-4 hours. When her's is done then Big B's will start. The kids will stay in the hospital overnight so their calcium levels can be checked (to make sure the parathyroid weren't damaged) and if all is well they will be released early the next day. Of course, I don't think I will be leaving the hospital at all the whole time and I'm going to be a wreck. I have to talk to my endo ahead of time about how much I should compensate on my meds to handle the stress from the day. I HATE that I can't even be stressed like a normal person. :( I don't want to have problems though and not be able to be there for my kids when they need me most.

They will take out the entire thyroid and also 5 or 6 lymph nodes as well. The lymph nodes are a "better safe than sorry" type deal. They will also be checking the parathyroid and if any of them (there are four) looks to be diseased then he said they will remove them and reimplant one in a muscle pocket in their neck (this part was new to me because I hadn't heard of that). We would rather take out the lymph nodes and find out the cancer hasn't spread there than leave them in and risk cancer spreading to their bodies later on. What we're hoping for is when they biopsy the thyroid (after taking it out) there won't be any cancer yet. That would be a VERY good thing for my children and mean one less cancer they have to worry about later in life. If the cancer HAS started but hasn't made it to the lymph nodes we remove then that is a good thing too because it means we caught it in time and my little darlings will be cancer SURVIVORS.

After the surgery they will be on Synthroid for the rest of their lives and we will of course have to adjust where needed to get them at the level they need. Hopefully that will go smoothly and we'll never have any problems with their meds.

So we have 28 days now until the surgery. That's 28 days for mama to cry in private, worry, soothe them, and try to prepare. I just hate all this so much. My babies shouldn't have to be getting cut open AT ALL. Of course, I'll keep all my fears to myself because that's my job and they deserve to have a mama who at least on the outside looks like she's perfectly okay with all this. The more solid I am the easier it will be on them.

On March 15th we will be meeting the new pediatrician/family practitioner and hopefully that will turn out well too. I'd like to get the kids set up all the way around with really good doctors. Next week I will be gone for my scan and liver biopsy and will have an update on that. Hopefully it will only take a week to get the results from that back so I can quit worrying. I'm scared to death of what that scan will find but I know it's out of my hands at this point. Even if the cancer is in several more places than we already know I can't change that so no sense worrying myself sick over it. I'll just take it as it comes just like I have been for 5 months.