Monday, November 29, 2004

Preparing For Tampa

This morning I took the kids' 24 hour urine samples back to the lab so hopefully we will have the results from that in about a week. The blood tests for the medullary cancer should be back by Friday or Monday at the latest I would think. I still haven't heard anything from the Pediatric Endocrinologist that Dr L was suppose to set us up with. I'll have to take her number with me and call tomorrow to find out what is going on. I just don't have the energy left today.

I went by the hospital and got the copy of my CT scans, Pathology slides, and Pathology report so those are ready to go. I tried looking at the CT films but I couldn't tell what was what. Big B kept saying everything was my butt. LOL. They had circled a few things on some of the films which I'm guessing are tumors. I figured out my liver one pretty easily. It was the one with three circled spots on it.

I came home and tried to call the doctor in Tampa to find out if they received my faxed records and if there was a copy of the CT scan report in with it. Of course, no one bothered to call me back and I'm NOT happy about that at all. I don't know if I'm just second guessing things or what but I'm really starting to worry if I made the right choice by choosing to go to Tampa for treatment. By the rude email I got back from the assistant at NIH, I may never be wanted there which I don't get but oh well. I just hope that I didn't burn a bridge there even though I tried very hard to be nice and give them notice. :(

I got snacks and such for the trip tomorrow and just have to finish packing. Lil Man and I will be leaving around 7am so I can get there in time to pick Vin's mom up at the airport around noon or so. No clue what we'll do for the rest of the day but then Wednesday and Thursday are my appointments and hopefully I will come home with a surgery date. I'm hoping they run some tests on me while I'm there. If they don't I may start looking somewhere else AGAIN for treatment. I really don't want to but I need someone reliable for this.

I'm so thankful for Vin's mom right now. Funny... I never thought I would say something like that with the way things were for so many years but the turn around between her and Vin and with her and our family is so wonderful. I may actually soon become one of those women who says "I love my mother in law!". LOL

The lab just called and said that the kids will have to have their blood drawn AGAIN. I wonder what happened this time. Dammit! Last time it was my sample that thawed out and had to be done again and now both of the kids have to go back in. This upsets Sis so bad and is so hard on us. Vin is beyond pissed to say the least.

And when I went to get up to answer the phone my foot was asleep and completely buckled under me. It made an awful cracking sound and I do believe I broke it. OW.

Wednesday, November 24, 2004

Kids' Bloodwork Done and Some Rambling...

I took the kids up to the lab earlier today to get blood drawn. Now the one to two week wait starts until we find out if either of them has cancer or pheos. I'm so scared to hope at this point for any good news. Big B just sat in the chair and let them take the blood like it was no big deal. I was so proud of him. Sis was scared before we even went in. It was rough on her and she freaked out once she got in the chair. She wouldn't turn her head so she wasn't watching them and she just started crying and whimpering before they even started. I just wanted to pull her out of that chair and beg them to stick me instead. I know I can't and it wouldn't matter if I did but this isn't how things were suppose to be. :( She was okay afterwards and we got the kids some shakes on the way home. I figured it was the least Vin and I could do for them now.

Rambling- I just don't know how much more we're suppose to take before I completely lose it. I'm thankful for whatever it is that has helped me make it through the last two months without having a breakdown but I wonder sometimes if the "storm" is coming still. A friend of mine said that this probably IS normal for me as far as my reactions go. She said that with all the abuse I went through throughout my life that my ability to detach from the pain has just carried over to this. I guess that makes sense. I guess I'm even thankful in part. Hell, the doctor cried more yesterday over the kids' results than I did. :(

I hurt and I feel like enough is enough. I told Vin last night that it would be different if I had lived a charmed life and then suddenly been handed this. But man, why has my whole life had to suck so bad and then get handed this too? This is just unreal! I'm not doing the poor me thing either. Anyone who knows me knows how bad my life has been from the time I was little to a few years ago. I can't f'ing believe I made it through all that hellish nightmare just to end up having a damn genetic mutation that causes cancer, adrenal tumors, and all kinds of crap!! And to actually HAVE all three things it causes AND two of my children to have it! It's just unreal! I mean what the hell man?!

The kids are taking it really well. I don't know if they will continue to once things start for them but I'm very proud of them. Vin said that he thought the hardest thing he had ever had to do was tell his grandmother last month that her son had died (for those who don't know, my husband's father died in a drowning accident on October 28th) but he says yesterday topped that. Having to tell the kids the news was the hardest thing he's ever done according to him. For me, I know the hardest parts are still to come. This is only the beginning. :(

Anywho- I decided not to take the Loratab today because I figured the pain from the kidney blockage most likely wasn't all that bad anymore. Man, did I find out just how much they really WERE helping! I've been in some pain the whole time because I can only take half a Loratab (I get very sick if I take a whole one) but they definately took the edge off. I still haven't taken one today. I guess some sick part of me feels like I deserve to be in pain today. I guess somewhere in my mind I figure my kids had to feel pain today so I should too. I don't know to be honest.

Tuesday, November 23, 2004

November 23, 2004- Appointment & Kids' Results

Well at my appointment today Dr L went over my ER visit and let me know that the blockage in my right kidney doesn't seem to be a stone and the infection is very mild which means I shouldn't have the kind of pain I'm having. So we're thinking it's cancer or pheo related. Ugh, more problems. I'm still taking my meds for now until they are done.

She gave me a copy of my medical records and also went ahead and faxed a copy to Dr LK in Tampa. His secretary had left a message earlier saying that basically they wouldn't do any tests this visit because they didn't have my medical records ahead of time and I would have to come back AGAIN the next week. Now, they shouldn't have any problem deciding what tests to run on me since they have my records and hopefully save me a trip back down.

Dr L also doesn't agree with my decision to get my pheo surgery in Tampa simply because it is going to be VERY expensive...WAY expensive and she hates us having those high bills but she is behind me no matter what choice I make.

Then she asked me to please have a seat. Then she started to cry. I told her "This can't be good" and through the tears she told me that the good news was that Lil Man's test for MEN2A came back negative. So he doesn't have it, he never will, and he will never have to go through any of this. The bad news was that BOTH Big B and Sis do have MEN2A. Both of my children now have this awful mutation that will effect the rest of their lives. Tomorrow they have to have blood drawn at the lab and then on Sunday they will have to do the 24 hour urine test. What we have to find out now is if either of them has medullary cancer or pheochromocytomas. If they do then this all starts again. IF they don't then they will just get the thyroidectomies and will NEVER have to worry about medullary cancer. The pheos will be something they will have to be checked for for the rest of their lives but the cancer at least will be no threat.

I'll be honest, I won't even allow myself to even consider that my kids don't have cancer or pheos. I won't set any of us up with any kind of hope like that. I told them it's highly unlikely that they will have cancer or pheos but in my heart I'm already trying to ready myself for it. I won't hope for anything at this point and fall on my knees with heartfelt thanks if I am finally lucky enough to have my children not be dealt this blow as well.

Both of the kids took it okay. Sis is scared because she hates giving blood and the whole thought of surgery is scary obviously but I told her I will be there for her through all of it. Big B basically made jokes about the whole thing so I honestly don't know how he feels about it. Neither one of them held it against Lil Man though that he doesn't have it and Sis even said "I'm glad Lil Man doesn't have it".

So tomorrow they have blood drawn.

Sunday they do the 24 hour urine test which I drop off on Monday.

Tuesday (November 30th) thru Friday (December 3rd), Lil Man and I will be gone to Tampa for my appointments.

The kids should have an appointment in Tallahassee, Florida with a Pediatric Endocrinologist the week after that to start discussing their surgeries. I'm hoping to have the surgeries done during their Christmas vacation so they dont have to miss any school.

Possibly the middle of December I will have my first pheo surgery.

The next week I will have a follow up with my doctor for me.

Then the last week of December hopefully surgeries for the kids.

For everyone else the holiday season has begun. For us it is already over because life is going to be going full force whether we like it or not.

Monday, November 22, 2004

Updates To November 22nd

About three weeks ago I started having some pain in my kidney area but me being me I pretty much brushed it off and ignored it. Last Sunday night (November 14th) I started having really bad right flank pain and feeling like I was being kicked in my right kidney by someone wearing boots. It wasn't too bad at first but the next day I called my doctor to see if I should worry because of all this cancer stuff. Well I left two messages on Monday, one on Tuesday, one on Wednesday, didn't bother on Thursday, and left two more on Friday. Never got a single call back from my doctor or her nurse all week. I was starting to wonder why I was being ignored and just wanted to know if I should worry about this pain that was getting worse with each day and maybe get the kids' test results.

So Friday afternoon I emailed my doctor and basically just asked what the heck was up and I just wanted to know if I should worry or not. Saturday she emailed me back and told me that it could be a number of things and to come in first thing on Monday to get some testing done. She also told me she never got any of my messages and she was horrified. She then gave me her phone number, cell number, and pager number and told me that if she doesn't call me back by 4pm on any day I call to call her on one of her lines. I really appreciated that.

Yesterday (Sunday) I couldn't take the pain anymore and I can take ALOT of pain but I just couldn't do it anymore. I had been fighting this horrid pain for a week and I was just drained so I called the doctor and asked her what I should do. She told me to go straight to the ER and called ahead so I didn't have to wait to get back there. Well that part was nice but the following FIVE hours was a bunch of BS to say the least.

The first hour (4:30p-5:30p) the doctor said what they would do and they had me pee in a cup. No one came in for the rest of the hour to see if I was okay.

The second hour (5:30p-6:30p) they took some blood and took the pee in the cup after I told them to. No one came back again for the rest of the hour.

The third hour (6:30p-7:30p) a new nurse came in and said she was my nurse, left, and I had a 5 minute ultrasound done.

No one came back for TWO hours. Not to check on me or anything. I had to lay there in pain for 5 hours without a single offer of anything at all. Finally I asked to use a phone to call my husband because I had left him with the kids and didn't expect to be stuck in the ER for 5 hours without knowing what was going on. Yes, I said it in a crappy tone too. I was beyond ticked off and Vin had to talk me into not walking out and going home. LOL. After I got off the phone with him I hear over the loudspeaker is "Dr Q, Dr L is on the phone and wants to speak with you".

Five minutes later I FINALLY saw the doctor who told me that I have an obstruction in my right kidney and the beginning of a UTI. Didn't tell me what is obstructing my kidney but I'm figuring most likely a kidney stone as those are one of the lovely things that comes along with this MEN2A. No clue what I'm suppose to do if it doesn't go away or pass though. Guess I'll find out tomorrow at my appointment. The ER doc also said that had I not gotten treatment for this it would have turned into an inflammation in my kidney and that can lead to death. Niceeeeeeeeeeeee.

Prescribing me an antibiotic was a royal pain as well because I'm supposedly allergic to the whole penicillin family and a whole other family of normal antibiotics. Finally I was prescribed Cipro for the infection and stuff and Loratab for the pain because I'm not allowed a whole lot I guess. Loratab makes me throw up and feel very sick so I'm only taking half a pill meaning that the pain is dulled but I can obviously still feel it. *sigh*

So it has begun. This is the start of many complications, appointments, trips to the ER, and surgeries. Not how I thought my life would be. Tomorrow I have an appointment with my endo to go over some other test results I had, get a copy of my records, and hopefully get the kids' test results. They're going to try to have the lab fax them the results so we know tomorrow. I also have to go tomorrow to get copies of my CT scan films to take to Tampa with me. Next Monday I have to get the slides from Pathology on my biopsy to take as well and then Tuesday afternoon Lil Man and I head out to Tampa to meet up with Vin's mom and chill out before my appointments start on Wednesday (December 1). So I won't be around from the 30th through probably the 3rd or 4th.

I will update again tomorrow after my appointment. Keep your fingers crossed that I know my childrens' fates tomorrow.

Tuesday, November 09, 2004

November 9th Update

On November 4th I took all three kids in to get their blood drawn for the MEN2A test. I still hurt from that and I can still hear Lil Man cry "Thomas Help Me" in my head as they drew his blood. I think that will stay with me always as will the look in Sissy's eyes as the needle went in.

We should have the results back in about 3 weeks so just in time for Lil Man's birthday. If any or all of them comes back testing positive with MEN2A then they will have to have a total thyroidectomy and be on thyroid replacement hormones for the rest of their lives. They will also have to seriously consider whether or not they want to have children since this is genetic.

As for me, on November 3rd NIH called and wants me there on November 28th for a week of testing. I have not cancelled my appointment with them at this point but I do plan on doing so. I guess they just gave me too much time to think and look into alternatives. The great things are that the treatment is free and they receive a ton of government funding and are one of the tops in research.

The bad things are they are supposedly slow with getting test results and records to you (that is based on two people I've talked to who went there), you will have to spend anywhere from 4 days to two weeks away from home several times during the treatment and protocol, if you are an outpatient you have to pay around $80 or more for each night of a hotel room or if your family is with you and you are inpatient then for them to stay in a hotel, and if you can't get a Mercy Flight then you have flight costs as well. I'm sure in the end still cheaper than paying a regular doctor's bills but still... it adds up. Also in there is the fact that it IS free care with strict protocol rules that must be followed so you honestly have to do what they say when they say or I'm sure you are out (not that they say that meanly because I hear they are very nice). I totally understand this...I really do.

Vin and I have talked about it and this just isn't what we want for my care. Too many things on too many levels just aren't how we want to go. I'm not saying I won't want to join a future protocol by them or anything because I very well might but I don't want my care focused through or by them. So we are turning down NIH at this point. I hope to use them in the future when they have clinical trials and such but I don't want them for my actual long term care.

The day after I got the call from NIH, I pulled myself up, wiped the tears, and decided that I needed to look into EVERYTHING I could for this. I felt I didn't have a choice but to go to NIH because it's free and we can't afford tons of hospital bills. Vin was in Massachusetts while all of this was going on and I really didn't want to bother him with it. The day I got the call he said that I had to go to NIH. I cried and told him I know it just didn't feel right and I hated it but I did know I had to go because it's free and means less bills. He told me not to go because it was free...go because I felt it was the best care there was. I told him I couldn't go for that reason because I felt there was other care closer to home that was just as good. The next day he was telling me that if there was something I felt was better for me then to do it and NOT base my treatment on money. He said me being well was what is important not bills.

So I called the appointment line at H. Lee Moffitt in Tampa, Florida to try to get an appointment with Dr. LK who is an endo specialist who deals with MEN, MTC, and pheos. They said the soonest I could get in would be January 19th. I told them thank you but that was too late and hung up. I was heartbroke to say the least. I sat down, cried a little more, and then decided to try emailing him since I had his email address. I emailed him asking if he knew of a pheo surgeon since I couldn't get in with him.

After I sent the email I called and got the number for a pheo surgeon my friend, Christine, had mentioned named Dr.R. His office handed me off to another surgeon's office and they called me back about an hour later. The lady was really nice, took all my info, and made an appointment for me with Dr MA (chairman of surgery at Tampa General) for November 9th. I hung up feeling better knowing that at least I would be able to get a pheo surgeon close by home and have the surgery in Tampa.

Another hour later Dr LK emailed me back and said that yes he deals with MEN, MTC, and pheos and would be happy to see me. I emailed HIM back and told him thank you but I had tried to get an appointment and they said they couldn't get me in before January. I said I'm due at NIH on November 28th so that is too late for me but thank you again and I look forward to hopefully going through him in the future.

Fifteen minutes later I got another email telling me he would fit me in on the Wednesday after Thanksgiving AND make sure I had an appointment with the pheo surgeon the very next day so I could have my surgery in December. I again cried but for a totally different reason this time.

I told Vin the news, talked to him some more, went through feeling guilty about running up bills when we were being offered free care, and then listened to the four people who were telling me that this was what I should do.

So I called this past Monday and cancelled my appointment with Dr. MA and on Tuesday and set up an appointment with Dr. LK for December 1st and they set me up an appointment with Dr WBC (the pheo surgeon) for December 2nd. I will take my CT scan films, my pathology films, and my medical records with me to the appointment with Dr K and then he will most likely dictate my visit with him right then and there so I can take it to my appointment with Dr C the next day. By the time I leave Dr C's office I should have a surgery date for December sometime to get the pheo/pheos out. Once those are gone then I can get the total thyroidectomy, lymph node dissection, and parathyroidectomy done.

I feel really good about this minus the money thing. That still bothers me and I still feel horrible about it but I just didn't like the feelings I got with having my care handled by someone so far away. This way care is close by if something happens and we're in control of it as well.

So the rundown is......

Kids' test results should be back in two weeks.

I have an appointment with Dr. LK (endo specialist) at H. Lee Moffitt on December 1st.
I have an appointment with Dr. BC (pheo surgeon) at H. Lee Moffitt on December 2nd.

After the pheo is out and everything in my neck is out then I guess they will decide whether or not to operate on what's left. If the spots in my liver are deep IN my liver then they most likely won't be removed and we'll just have to do what we can to slow their growth. The one in the intestine I don't know if they will remove or not. I guess we'll cross that bridge when we get to it. I'm never going to be cancer free so my main goal right now is just to take out what we can and keep the rest to a minimum so I can enjoy my kids.