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.