Life After Pheos
This is the update since I was released from the hospital a week ago. I want to catch things up so I don't forget everything.
Friday (January 28th) after leaving the hospital we proceeded to take a drive through Tampa. LOL. So much for resting. Vin showed me where the Aquarium was and then we drove over by Clearwater to visit the Italian Market him and his mom had found. It's a cute little hole in the wall with the most wonderful little Italian woman you have ever met! She kept calling me "sweety" and "baby" and asking me how I was doing and to get better. Too cute! I wanted to take her home and have her be my mama. LOL. We had some very good riceballs (even Lachelle liked her's if that tells you anything!), got some Boylan sodas for Vin, some italian cookies, and a few other things and then finally went back to the hotel.
Once there I felt that horrible wired feeling still and couldn't sleep. I took a shower and then laid on the bed holding Lil Man in my arms (the lil guy climbed up with me, stuck a hand up my shirt, sighed, and fell right to sleep) while the older kids read on their bed and Vin tried to get the laptop to connect to the internet. Later on we ordered some stuff from the TGIFriday's and watched a little TV.
While everyone else slept that night I didn't sleep at all. Not a single minute even. I wanted so badly to just go to sleep but I couldn't get comfortable and was having such a huge adrenaline rush that there was no sleeping. So I laid there all night holding Aidan, rubbing the back of Vin's neck every so often, and just letting my mind race.
Saturday morning we got up and gathered our things so we could finally leave. While Vin and the kids had breakfast in the little cafe I asked to talk to the manager of the hotel. When he came out he gave me this look like "oh great" so I looked him square in the eye and said "Listen, I don't want anything free or discounted. All I want is for you to honestly listen. I am a patient at Moffitt and my family stayed here this past week. When I called to set up the room I specifically asked for adjoining rooms that you can walk through. The girl said they had them, we could book them, I did, and then my husband even called back confirming a second time that you could walk through the rooms. When we got here on Friday we were a bit early and told the rooms would be ready around 3pm so no biggie. We came back at almost 5pm and check in is at 4pm, and were told not only were our rooms not ready but that the only rooms you had were just side by side. We ended up not getting the rooms we booked and had to settle for side by side. Once we got into my mother in law's room we noticed that HER room had a door to another room and asked about being moved. We were told someone was in there and we could move the next day. The next day more lame excuses even though no one was in the room." I then proceeded to tell him, "Not only that but this is our second time here and for the second time your carpets turned my children's feet black. I know it's from your carpets because it happens after bath time. That is disgusting as is the roach my son killed in the bathroom that you could have ridden through this lobby." He looked at me and gave me that lame line about how sorry he was and that they get the carpets cleaned once a month. I told him "You need to fire your carpet person because they are disgusting! You are on Moffitt's list for hotels for families of cancer patients to stay at. You need to take that more seriously. My family already had to worry about me in the hospital and they didn't need to worry about the hotel they were staying in as well. If you can't have a decent standard then you need to take your name off the list. Unfortunately we'll probably stay here again because the price is good but to be honest at this point I would rather spend more money somewhere else that I know isn't gross and my family is taken care of at".
He gave me his card and told me next time we were coming to town to email or call him and he would make sure we got one of the newer rooms and were taken care of. :( All I can say is he better HOPE we're taken care of. As I said, I didn't want anything free. I just want them to realize what they are doing. If a hotel is on a list for a cancer center then to ME they should have a certain standard. Families have enough to worry about without worry about roaches and filthy carpets.
After everyone was finished with breakfast we checked out and then I called Dr. BC. He told me to call him before we left town so we could make sure everything was alright for me to leave. I informed him that I have had the wired feeling all week and am not sleeping so could he prescribe a sedative when I get home, blood pressure is good, pulse is good, have a headache but all in all ready to go home. I hung up with him and we went back to the Italian Market to get some sausages and such that Vin wanted, a Mouffelatta sandwich for the road, and then stopped at Starbucks so Vin could have one last cup of his Vanilla Mocha thingamacoffee. LOL. Then we headed out of town.
The trip seemed so long and I was tired but couldn't sleep. Lil Man wouldn't go to sleep either so we stopped more than we wanted and he was quite irate. We finally got home around 4pm and just brought in what we needed for the night. I thought for sure I would be able to go to bed and sleep like the dead now that we were home. Instead I started having facial flushing (face heating up and turning red) and had to fan myself several times. I also started getting an awful headache that was starting to throb. Blood pressure was normal the whole time though.
Saturday night was another night with no sleep at all. I was wide awake the whole night and my mind wouldn't stop racing. The things you think about at times like that I swear. In my head I wrote an email telling my ignorant sister what a bitch she was for never even bothering to email or call me to wish me luck on my surgery, wrote my update from the surgery, did a grocery list, had conversations with people that were perfectly scripted... it was a mess let me tell you. LOL. Then I was hit with gut wrenching stomach cramps and diarrhea. I was suppose to be constipated according to Dr BC so that scared me some. Everytime Vin woke up I was staring at him and almost in tears because I just wanted to sleep.
Sunday morning I started with the flushing, the headache, and some dizziness. I called Dr. BC again and told him to which he replied that it sounded like now that the pheos were out the "carcinoid" that they thought was in my small intestine was kicking in along with the calcitonin. In other words, with the pheos now gone the cancer was able to make itself known. This whole time the pheos, hyperparathyroidism, and cancer have balanced each other out so I've been normal. Without one the others now feel it's time to play. Dr. BC said he would find out what he could put me on that wouldn't disturb me being in the study at Duke and then get back to me. I spent all day feeling crappy, starting to feel sore from the surgery, and just wishing I could get tired and go to sleep. I emailed Dr. BC and his nurse practitioner telling them that I was going to need a sedative to help me sleep until we cut the steriods back some more as well as asked Dr. BC to explain to me this carcinoid thing since he was the first person to ever mention it to me.
No sleep at all for me Sunday night. I laid there until about 11:30p just thinking about things, got up and worked on the blog until 3am, and then laid down again until 6am when I got the kids up for school. Again, I wasn't the least bit tired even though I hadn't slept in days. I wanted to clean the house, run around the block, and do some exercise but instead still have to sit here because I didn't want to push things after the surgery. After getting the kids off to school I laid back down with Lil Man and just waited for him to wake up.
Monday the nurse practitioner called me back and emailed me as well and said that Dr. BC would fill me in on the carcinoid thing in a day or two and that they were prescribing me Ambien to help with the sleep. I told her the flushing and other symptoms were starting to get a little better and that as far as the surgery went I was feeling fine. Didn't do much on Monday but hang out with the little guy and sneak in a load of laundry. It figures the one time in my life I actually WANT to clean and do stuff and I can't. LOL. Heather (the NP) also told me that Dr. BC wanted me to have my calcitonin levels checked and a 51HAA Seratonin check (24 hour urine test). Of course, she didn't tell me that it was the 24 hour urine test and instead she thought both tests were blood draws. So we started trying to see where I could go to get that done. Found a place out by the airport, she faxed them a prescription to get the draws, I called to make sure they received it, and then set up an appointment to get the blood drawn the next day at 11:30am.
Monday night I took one of the Ambien's and proceeded to have the night from Hades! It didn't make me the least bit tired and as I lay there hoping for sleep I started to feel like little pieces from my head were floating away. Seriously, it was the most messed up thing I've ever experienced in my life! Then my bone/muscle pain got so bad that I was literally trying to pull my arms and legs off as I lay there in bed. I tossed and turned all night STILL not sleeping and once morning came I felt like I had been hit in the head with a sledgehammer. I told Vin that it's bad enough not to have slept at all in days but to add that to it was pure hell. :(
Tuesday morning I went to get the blood drawn just to find out that 1- the place was a total shithole. Seriously it was by an airplane hanger, dirty, and the people there were just plain rude and stupid. Welcome to South Georgia yet AGAIN. *eyeroll* When I got there the receptionist had no clue if they even received my fax and just looked at me with a blank stare. I looked back at her and said "Do you think you could bother LOOKING for it?". That of course got me a dirty look which of course got her one right back. LOL. Then a nurse/person pretending to be a nurse/whatever looks by the computer and goes "Is this it?". I said "If it says my name on it then I think you have a winner there". So once they figured out that YES they DID have a fax with my name on it I was informed that the girl who does blood draws was out to lunch. When I asked them to just give me my damn paperwork so I can go somewhere else they said she should be right back so I figured I would wait a few minutes. When she came back she told me she was going to look up the tests to make sure you didn't have to do anything special, I told her good idea because you DO have to, and then a few minutes later she came out holding her little book telling me that the Seratonin test was a 24 hour urine test and that they didn't have the chemicals to do the test anyway.
So I took my fax with the paperwork and left. When I got home I called Heather (NP) and told her that she needed to tell me AHEAD of time if something is a 24 hour urine because you have to.... COLLECT the urine for 24 HOURS ahead of the test. Kind of important there. She said she didn't know and thought it was a serum test like the calcitonin. I told her I would see about setting the tests up at Dr. L's lab even though I don't want to go there. Asked her AGAIN to make sure Dr. BC called me regarding the carcinoid thing, told her what happened on the Ambien (to which she was shocked and said she loves the stuff), and told her that yes I was still having carcinoid syndrome symptoms but they were slowly getting better and no real pain from the surgery.
Throughout all this we had been slowly tapering off the Dexamethasone so that I have been starting to feel somewhat normal. Even a little tired at times and slept for a few hours on Tuesday night.
Wednesday I tried calling Dr. L to get back in contact with her. I honestly don't know WHAT she expected from me. I was so thankful to her for all the testing she did, stayed with her even though she said she didn't know much about MEN2a and so on, and even asked her opinion at times but when I had to start finding surgeon's and doctors and all the info on my own for everything what did she expect? She was shitty to me the last time I saw her and showed no interest in anything I had to say. So WHY should I go out of my way to inform her of everything I'm doing? If she's not going to be a partner with me in this and HELP me find doctors, trials, and info then at least refer me to someone who will.
Anyway- got nowhere on Wednesday with that office as usual, didn't hear back from Dr. BC, and just hung out around the house with Lil Man. Actually felt pretty decent for once and almost human again.
Thursday I finally got ahold of Dr. L's nurse (B) and started setting things up. I set up an appointment for next Wednesday to catch up with Dr. L and fill her in on things, set up to have my labwork done on Monday afternoon, and also asked B about having the adrenal function test set up. She said she would get back to me as soon as she found something out and that it was her last day of working there. :( That made me sad because she is the ONE person in that entire office that wasn't a screw up. She was the one person I could depend on who would get things done and do them right. Now I'm afraid of what we're going to go through with these people again. *sigh*
Friday Dr. L's new nurse (Nicole) called me and told me that Dr. L would discuss the adrenal function test with me on Wednesday. Ummmm time to break in the new nurse. I informed her that NO we would not. She stuttered a little and I told her "This test needs to be DONE next week not discussed. Dr. L needs to either order the thing herself or tell me where I can go to get it. I'm not playing games here. The surgeon wants it done next week not talked about and I'm not staying another week on steriods if I don't have to so tell her to either order the damn thing herself or tell me where to get it.".
I then told the girl that Dr. L needs to call me this weekend to which I got "Well she doesn't do that but I will tell her. I'm afraid you might have to wait to hear from her though". LOL. New girl is so cute. :) So I told her "Look it's like this, she gave me her home number, cell number, and pager number so I CAN call her anytime I WANT to. I am trying to be courteous and allow her to call me at HER leisure so either she calls me or I will call her Sunday night".
I hate being a bitch but at this point I've realized I have no choice. Doctors don't want to help you. They want you to just sit there, take whatever piddley ass excuses they give you, bill you for it, and then leave you hanging. My life is too short for that so yeah, now I'm the patient from hell and hard to deal with. Oh well, they'll still take my money just the same only now they actually have to work for it. Not how things SHOULD be but it looks like how our society has become.
So as far as the surgery goes- I seem to be recovering fine. We still don't know if what's left of my adrenal gland is actually functioning or not but hopefully we'll know in a week or so. As for the "carcinoid syndrome" or the symptoms I now have since the surgery- they're getting better. I still have the flushing but not like I did at first. I get headaches alot still, dizzy at times, and I tire very easily but hopefully all that will ease up with time as well. The diarrhea (LOVE posting that in my blog let me tell ya. UGH. But I know that it's important too because it's part of all this) isn't bad either which I'm thankful for because from what I hear it's one of the big problems with the high calcitonin levels.
Oh and even though I'm awake at 4am right now- I've been sleeping better lately. I've been getting at least 4 hours of sleep a night which is what I got before the surgery so not too bad. I even had a nap on Friday when I overtired myself out by going grocery shopping with Vin. I've never been so thankful for a nap in my life. LOL. Now if only the paleness would go away. I'm so tired of being ghost white all the time but it's not something I'm going to waste any actual time worrying about.