Thursday, July 28, 2005

July 28 Pain Appointment

Just got back from my appointment with the pain doctor a little while ago. The short version is that it most likely is going to be ANOTHER month before I have any relief from the pain. That alone almost sent me into tears but then of course, it continued.

I told him that the Zonegran has done nothing for the pain thus far and all it does is leave me feeling groggy the next morning and with a headache. For twenty days I've had this stuff so you would think it would do something by now. At first he wanted to up the dosage but then he decided instead to put me on an anti-depressant that supposedly has shown to help with nerve pain/damage. So I was put on Cymbalta 30mg for two weeks and then 60mg and come back in 6 weeks. :(

He asked how my moods were lately and I told him honestly that I'm on the verge of tears most days because the pain just takes so much out of me. Of course, then I was given the schpeel about how depression can do this, this, and this and so on and told that the Cymbalta will help that as well.

Why in the hell can doctors NOT get that I do NOT have depression, I don't want depression, and I have no reason to feel I should have depression?! YES, I have been through alot and yes I know other people at this point might have depression but the ONLY thing that is bugging me right now is that I am in pain nonstop!! It's like they just can not comprehend that someone might actually be able to handle life and deal with a crappy hand they might be dealt. I'm sorry I'm not a wimpering ball of depressed muck so they can all have the joy of diagnosing me and putting me on MORE pills.

I have been through some really hard stuff in my life. Stuff that SHOULD have depressed me and tossed me into a pit but I'm stronger than that. BTW- anyone with depression please don't think I'm saying you are weak. I'm just talking about my feelings about myself personally. I'm all for it for other people. LOL. Anyway- I've been through plenty of other crap and never had depression nor did I take meds for it so just because I have cancer and have been through hell the last year I automatically SHOULD have depression and beg for meds?

Please, if I won't let cancer and genetic screw ups take me out do you really think I'm going to let something like depression have me? Sorry it's just not happening and I really wish doctors would accept that. Well I should say Dr L has accepted that because she doesn't even ask anymore. She knows that if I ever think I need something I will ask and I greatly appreciate that.

I do like this new pain doctor don't get me wrong. He is very kind, courteous, and trying to help me out. I just wish he would quit pushing this depression thing on me. Of course, now it's kind of taken care of isn't it thanks to taking the Cymbalta for pain (in combo with the Zonegran)? Oh well, maybe if nothing else it will work on the pain and make me a Stepford Wife for a couple months. LOL

He also explained that the reason he isn't giving me meds that work immediately is because he feels it will take about 4-6 months at least for me to not have problems with pain anymore and he really wants to help me with the long term rather than short term so that is why we are using the Zonegran and Cymbalta. I appreciate that even if it is hard right now while I'm hurting so bad. He also said that the Cymbalta is just to help during this 4-6 months and he in no way expects me to have to continue on it or use it for long term depression or anything. At least he's catching on. ;) I told him that works for me because I'd rather save the anti-depressants for people who actually have depression but again, if it makes me act like a Stepford Wife for a few months then we'll consider it an early Yule gift to Vin and the kids. LOL

Saturday, July 23, 2005

Update From My Endo Appointment

Well first of all, the results of the kids' bloodwork came back last week. The results were pretty good overall. Both of them came back with good calcium levels which is very good and means Big B is hopefully finally doing well with his hypoparathyroidism. Both of their thyroid panel results came back showing them hypothyroid though so we had to raise Sis up to 88mcg of Synthroid and Big B up to 125mcg of Synthroid which by the way is what I'M taking! They were only slightly on the low side with the thyroid levels though so we will redo their bloodwork in about 4 weeks and see how they are doing again.

Last Thursday I found out that I only have one optic nerve in each eye. LOL. After what I had heard about some people with MEN2a having extra optic nerves I had wondered but nope that is at least one thing I am normal on. :) I did however need glasses and got to pick those up yesterday. I can't see worth a darn but the doctor says that is most likely because my eyes spent so long trying to compensate for my bad eyesight that now they are fighting the corrective lenses. So we'll give it some time and go from there. I'm sure I will adjust though.

On Tuesday I went to my appointment with Dr L. It was odd because I was in the room that she first told me the results of my biopsy in. As I sat there waiting for her I just kind of reflected on all that's gone on the last 9 1/2 months. Man, you never realize what a roller coaster ride it's been until you sit and think about it all. I will honestly say it brought tears to my eyes reliving the day she said the words "Your biopsy results came back abnormal for being abnormal" in my head. It's true what they say about your life changing in an instant.

Anyway- she noticed that I've gained weight and said that it is most likely the high dosage of Dexamethasone they had me on after the surgery. She also told me that it's not likely I will lose the weight which honestly almost sent me into a state of instant depression so deep I would have needed some REALLY REALLY good drugs to get back. :( I have gone from weighing 157lbs last September (which looked nice on my 6' tall frame) to now weighing 180lbs and 13lbs of that was gained in between June 2nd and June 11th.

I feel like everything has been taken from me and I know I shouldn't feel that way because I'm still alive, my children are still alive, and things could be so much worse but I can't help but feel cheated and angry. It's just the human side of me I suppose. I will never be considered pretty again as it is thanks to the scar on my neck and the scars on my stomach but now I have to live in this heavy body that isn't me. I feel like I'm trapped inside a bubble and I can't get out. I may end up needing those anti-depressants after all if this weight isn't going anywhere. Isn't it sad that I made it through cancer and everything else but may end up with depression over weight?

Back on track- so she went over the weight thing, we discussed my lab results, she told me that I can exercise just like anyone else and all I have to do is stay out of the heat, and she said I might want to cut back on carbs and up my proteins to help with the weight thing. She also gave me a sheet of paper to give the Emergency Room in case I ever have to go in again with adrenal crisis. It's to help insure we don't have problems like we did the last time. Supposedly all I have to do is give them that piece of paper and they will treat my adrenal insufficiency like they are suppose to. Here's hoping anyway eh?

I told her about the fiasco with the ped endo in Lake City and she said keeping track of the kids until we hopefully move in January shouldn't be a problem. I was so thankful and so relieved that she agreed. She's not a ped endo and doesn't have to do any of this so it's really wonderful of her to be willing to. No more searching for creepy endos for the kids. YAY!!

Now on to some of my lab results. My calcitonin levels pre-surgery were 16,660 (give or take) and as of my last blood draw my levels were 36. This is VERY good. We're hoping it drops more of course but as long as it doesn't start going back up again then we can hold out hope. My calcium level has stayed between 9.0 - 9.6 which is normal and good. It means my parathyroid is working fine as far as that goes. My thyroid panel came back as slightly hyPERthyroid so Dr L dropped my Synthroid from 125 to 112 which means my 14yo son is on a higher dose than I am. I don't get that but okay.

And now for the one bad result- my intact PTH which measures the parathyroid hormone in your system. Pre-surgery this level was around 92 which was elevated but not a HUGE deal. Now it is at 515 which is VERY bad. The doctors in Tampa seem to be scrambling and trying to backpeddle now. They are basically hoping that by removing the adenoma they put into my right forearm my PTH levels will go down to normal. If not then it means they screwed up and we may be looking at parathyroid cancer.

Keep your fingers crossed for me that removing this stupid thing in my arm fixes things because parathyroid cancer means chemo and rad therapy. Not something I'm looking forward to and it would really suck to make it through the other cancers just to end up at this same crossroad anyway.

I was suppose to go down to Tampa on Monday (July 25th) but they decided to schedule the procedure at 4pm which would put us getting back home around 11pm at night. That is just too hard on everyone so I cancelled and will be emailing Dr BC this weekend to see what kind of doctor I need to look for here to remove it and also what doctor I need to see around here for the tumor still left in my intestine. At this point I'm guessing they think it is benign so no reason for me to go back down there to that craphole again.

So that's it- those are the test results, we'll hopefully find someone to get this thing out of my arm, we'll move on to the tumor in my intestine, Synthroid level was dropped, the kids have blood draws in 4 weeks, I have a blood draw in 6 weeks, and we don't have to see her again until December.

Monday, July 11, 2005

Another Ped Endo Bites The Dust

Well I took the kids to meet a new pediatric endocrinologist today only to have it go horribly horribly wrong. :( When I called and set up the appointment in the first place I asked specifically if the doctor had ever had a patient with MEN2a and was informed that he had but it had been awhile. This is part of the reason we had chosen him in the first place.

So the kids and I drove the over an hour to Lake City to see Dr. FT Weber. Our appointment was at 2pm and we arrived at 1pm. Filled out the paperwork and sat there until almost 2:30pm before being called back to a room. Once we got back there we sat there for OVER AN HOUR before the doctor bothered to come in. We started talking and he starts asking me a ton of questions about ME. I figure okay fine he just needs history until he asks me if I'm still menstruating. WTF???? That was strike two (the long long wait was strike one) and I should have listened to my instincts and walked out right then and there but instead stupid me stayed.

He eventually got to asking questions about the kids, babbling about books or some crap to Big B, didn't seem to listen when I told him we still had an hour's drive to get home, and then tells Sis to come over to him. As soon as she is in front of him he lifts up her shirt, tweaks her nipples, pulls the waistband of her pants out, and says "She's in the beginning stages of puberty". I about flipping fell over right then and there!!

I was in such a state of shock and it took me a good five minutes before I gathered myself. By then he was telling Big B to hold onto some beads on a string, measuring his penis, holding his balls, and telling me that Bret was well into puberty. In the meantime I had looked over next to me to see my daughter with tears in her eyes and a look like she had just been violated.

I felt like the worst failure of my life and asked Sis if she was okay. She told me that he had scared her and I told her that we would NOT be coming back again and I was sorry. The doctor didn't seem to hear me and continued to blah blah blah and eventually basically tell me that he didn't think he was qualified to see the kids. I then asked him if he had ever had an MEN2a patient before to which he said he hadn't and no one said he did. I told him that his damn receptionist told me he had and that is the only reason I had brought my children here!!!

So long story short- we will never go back, his manner with children sucks, he left my kids feeling violated, his receptionist is a moron, and that's one more pediatric endocrinologist out the door. I'm also going to report this to our insurance company so they will hopefully take him off the list of providers. I just can't believe he 1- did that to my kids, 2- tried to tell ME that his receptionist didn't say he'd seen an MEN2a patient, and 3- that he can even practice because the man is a freaking pee brain!!

Tomorrow we all have to get bloodwork, on Thursday I finally get to go to the eye doctor, and next Tuesday I see Dr. L again. Hopefully we all show as doing okay on the bloodwork.

Saturday, July 09, 2005

Catching You Up To Now

I figured I would just skip the play by play and just catch you up to the here and now so here it is. I had bloodwork done a few weeks ago but I guess the results didn't make the doctors happy so I had to go back and have it repeated the other day. It will be about a week before we get those results back and then we will go from there. I would love to tell you what some of the results of the first set of tests were because some of them were VERY encouraging but I'll wait until we get these second results instead. I just don't want to get mine or anyone else's hopes up.

Over the past month I have been in ALOT of pain that seems to just get worse with time. Right after the surgery everything in my neck was numb so I didn't feel much. As the nerves have reconnected I've began getting shooting pains and feeling like I had fire in my veins. I've also still had some numbness and my right arm likes to go numb on me. I've tried every pain killer I have (which is quite a few at this point) and none of them have even taken the edge off much less stopped the pain.

I informed Dr. BC of this over a week ago and his answer was that most of his patients feel better not worse and he doesn't know what could be causing this. That was followed by oh it is probably the fact that my calcium dropped from 10.5 to 8.5. That MUST be it. In other words, he doesn't know and doesn't care to know. :(

Finally last week I complained yet again to them about the pain (I can't sleep or function normally) and Dr BC's office set me up with a pain specialist. I went to see him on Thursday morning and was given yet another pain killer to try. The doctor was very nice, very excited to get to meet a MEN2a patient (said he'd been waiting 15 years. LOL), and we talked about homeschooling.

He did a thorough exam and made lots of notes so I was happy with what he was doing. I have another appointment in three weeks and we will see if I've made any progress at that time. He says that all feeling should eventually come back and the pain should go away but in the meantime it's not fair for me to suffer so he will take care of me. That's nice to finally hear from a doctor.

No one has said anything about the fact that I gained 15lbs right after the surgery. It's starting to make me mad that it's not even something they feel is worth bothering with. I personally find that pretty important and plan on being a royal pain in the butt until someone says or does something about it!!

Next week is very busy for us. I finally found the kids a Pediatric Endocrinologist and they have an appointment on Monday, July 11th. His name is Dr Frederick Weber in Lake City, Florida and he has had MEN2a patients in the past. He said it's been a long time but hey, at least he's treated them before and that's better than what we usually get. I'm really hoping this works out because I hate looking for doctors for all of us all the time. Nobody gets how draining that is on me.

On Tuesday, July 12th the kids and I have bloodwork at the lab here. Both kids are getting full thyroid panels done so we can check an make sure they are on the right Synthroid dosage plus we will check their calcium levels to make sure they are doing alright. Sis has been stable the last few times we've checked so hopefully she stays that way. Big B was normal last time and I'm really hoping he is again this time. We're keeping our fingers crossed anyway. I'm getting full thyroid panels and I'm not sure what else since the other lab took blood on Friday. If I hear that my thyroid levels are normal I'm going to scream. I really am because I'm having so many symptoms of hypothyroidism it isn't even funny! I'm so tired of feeling like hell all the time.

The doctors also suspect that I am currently hypocalcemic because I have alot of facial and hand tingling. The pain specialist the other day also said he believes I'm hypocalcemic because of something with my reflexes. I don't remember what he said exactly but something about the way my reflexes responded told him that my calcium levels were low. I guess we'll see right?

Next month we all have a Dermatologist appointment on August 11th. Sis will be getting the spot on her scalp checked to make sure it is alopecia areata and that the hair is growing back alright, she'll be getting the spot on her back checked, and she'll have the keloids on her thyroid scar checked. Big B will be getting his keloids on his thyroid scar checked and that's honestly all he needs looked at right now.

I will be getting the works. LOL. I need to have my scars from both surgeries checked, ALL my moles on my body checked because they have all doubled in size since the first surgery, a skin condition I have checked, my acne checked, and some moles biopsied. Basically I'm a skin wreck. :) I figure if we're going to get looked at we might as well get it all done at once!

I'm also suppose to go back down to Tampa on July 25th to have them remove the whatever it is from my forearm but at this point I really don't want to. If I'm having this much trouble keeping my calcium levels up WITH it in how bad is it going to get when they take it out? So I'm not sure what I'll do at this point but I'm waiting until my test results come back before I make a decision.

I just hope the pain ends soon because it is staring to wear on me. It's so hard hurting nonstop. I can't lift things, or hold things, and if the children touch me wrong I almost burst into tears. I don't want to live my life like this. Hopefully once all the nerves in my neck and shoulder heal then I will be back to normal. If not... well I just don't want to think about that right now.