Well… one day down… I made it through the very first day of doctor appointments. My head is spinning with all the information that I was given. I have seen so many doctors today and did so many things. I have so many things to sought through. In fact, I didn’t even receive the greatest news either. However, I don’t think it has “sunk in” because it really hasn’t “hit” me yet. I don’t think it will “settle in” until I come back to New York because as of right now, it just doesn’t feel “real!” Even though I didn’t get such great news, I really don’t feel like it is really happening. You know what I am saying? I don’t know why this is the case, but it is. Maybe it is because I am able to “pretend” it isn’t real since this isn’t my “real” life or how things really are in my life.
But anyway… I really have a lot to digest. Perhaps that is why I don’t think it is so “bad” and why it all hasn’t “settled in.” I have been through so much today that maybe between going through so much, it just has been too much to bear. U know? I have seen three doctors today including the brain surgeon, autonomic dysfunction/neurologist, and transplant doc. I have gone for countless tests as well including blood tests, x-rays, etc. I have also been set up for even more tests and to see other doctors, which are tests and doctors that I was not prepared for. I don’t know what I am going to do in a way because for the doctors that I am not prepared to see, I don’t have all my medical records printed out for them. My medical record is like a book and before I see each and every doc, I always print them out from home. This way I can give each and every doctor a copy of my records so that he/she knows what is going on. However, since I was not prepared to see these new doctors, I didn’t bring extra copies with me. I hope it will be ok. But even if it is ok, it would really be beneficial if I had them since I am so complex and complicated and so that they could better understand me. I really wish I had some extra copies with me. But… can’t cry over spilled milk, right??
What a huge and trying day it has been for me. It started out with going to see the brain surgeon. The brain surgeon doesn’t know if he is going to operate, despite the fact that I have the brain tumor on the pituitary gland. I have the other complicated problems, and I am also considered extremely high-risk. In addition, brain surgery isn’t an easy task to begin with either. Therefore, he doesn’t know if it is worth taking the risk because he doesn’t want to do more harm than anything else. He doesn’t want to spread my underlying disease, which can very well happen because my disease spreads through “trauma” and surgery is very traumatic.
However, he said that he wants to see exactly where he stands with the tumor before proceeding. In the previous scan that we showed him, the tumor was 10 mm. It is considered somewhat big, but unless it grew, I don’t think he is going to touch it. Even though I am having a lot of difficulties such as double vision, headaches, etc. he doesn’t really want to touch it unless it has “grown.” Therefore, he wants me to get another scan performed so that he could compare it to the one that was already taken. The only thing is that we don’t know if this can be done.
I have had surgery in the past because I had a dorsal column stimulator placed in me. It had failed me and therefore, it had to be removed. Well… when the surgeon removed it, the surgeon had left something in my back. We don’t know what it is, but there is definitely something back there. It doesn’t take an “Einstein” to know that there is something back there because you can see it right through my skin. It literally protrudes right through my skin from my spine. However, we don’t know what it is and therefore, if it is metal… it would mean that I can’t go for an MRI because you can’t have an MRI if any metal is in you. If it is metal and I went for an MRI, it could easily heat up and melt away my spine since it is located right on it. We have called up the original surgeon who performed the operation to ask what was left in my spine, but he insists that he “personally did the operation and didn’t leave anything whatsoever in my back.” Even when my doctor (internist) said something, the surgeon’s response was that he “personally did the surgery and it is very unethical for another doctor to say something about it.” However, the surgeon didn’t even want to see me to see what we were talking about… so you go and figure it out. So… we just don’t know what to do because we have no idea what it is.
Therefore, since we don’t know what was left in me, I have had countless x-rays and scans to try to figure out what was left in me. However, no one can figure out what it is. The brain surgeon that I saw today sent me for another x-ray today so that he could see if he could tell if it was metal or not, and this way he would be able to see if I could go for the MRI, which is something I desperately need. I definitely need to go for the MRI because that is the only way to really know what is happening with the MRI and to know if surgery is going to happen. If I can’t go for the MRI, the only other scan that they can do is a CT scan, and that won’t be good enough to let us know if surgery is warranted. CT scans aren’t sensitive enough and unless the tumor grew really significantly, it won’t show anything. It is like comparing apples and oranges. So… I am in big problems. Hopefully, I will be able to have the MRI.
I did have the x-ray taken today and I am awaiting to hear from the brain surgeon what the results are. I really need to know ASAP what is going on because I have the MRI scheduled for tomorrow. Originally, they wanted me to have the MRI scheduled at 8:30 at night. Can you imagine? I never hard of people scheduling a scan so late at night, especially when it is over an hour long. But then again… nothing surprises me with this hospital because they really bend over backwards for patients. They really do anything and everything for their patients. I never saw anything like it. These doctors are really the BEST. The only thing that stinks is that they are on the other side of the country. When I explained to them that I can’t have the scan at that time because I can’t “walk” at that time, as I get progressively worse as the day goes on and by the late afternoon I am completely “gone”, the hospital really went out of their way and scheduled me at an earlier time. However, it was of course all dependent on the fact that the piece in me was not “metal” because I can’t go for an MRI if it is. I called the brain surgeon to ask him what the results were and to ask for him to call me back, which he said he would, but I haven’t heard from him as of yet. I guess I will have to call him first thing in the morning because otherwise I don’t know what to do about the MRI because like I said before… I can’t go for it if the piece if metal.
The doctor also ordered me to have more bloods taken, so I had to do that as well. But, I had to wait til after I saw the other doctors that I had today because I had no other time to do it beforehand. Luckily I did that though because all the other docs had me take bloods for them also. By the time I had all the bloods taken for all the doctors, I had to have about 15 vials drawn. I thought I was going to vomit because I had so much blood drawn. Even though it appears that I have such “good” veins, my veins are really fragile when they enter them. Plus, it isn’t so easy on me because it is so painful. I am extremely hypersensitive and therefore, a simple needle stick is like someone sticking a knife in me. But… I had no other choice because it had to be done. So… I had to grin and bear it.
I then had an appointment with the autonomic doc/neurologist. He didn’t like what was going on. The doctor wanted to put me into the hospital and give me IV immediately because he said that I was extremely dehydrated. He said that something was wrong with my “plasma” and that it really needed something. I am not quite sure what was wrong with it, but I needed something. However, in order for this to occur, I would need to be literally knocked out in order for this to happen because of the pain that would occur from the “line” that they were putting in.
So… the doctor is trying to schedule something before I go home, so that I can get the stuff I need and be knocked out. The thing is that it isn’t such an easy task You have to usually “wait” and if you are going to be “sedated” in the way that I am because the team that I need to have is usually “booked,” especially when I only need to be sedated to put a “line” in. But, the doctor is doing whatever he can to accomplish this. He told me that he will get back to me within the next day or two because he wants this to happen.
The doctor also set me up with another doctor to see. The doctor is known to do ketamine, which is good because I desperately need ketamine with my underlying neurological disease. Ketamine is the best thing for me and in a high enough dose, it can potentially “cure” me. Of course I can’t get it in the United States because it isn’t FDA approved at that level and that is why I am waiting to go out of the country, but I do get it in a much lower dose here in the country. I have been getting ketamine comas every other week in NY, but it is nothing compared to the dose that I require. However, at least when I am in the coma in NY, at least it is 1 day out of pain… which is something I would gladly take, even though it comes back once I wake up. Anyway… it is so good that they do ketamine here because it is so very important to especially get ketamine when they are doing anything “traumatic” to me so that my disease hopefully doesn’t spread further. So… hopefully whenever I go for something, I will be able to get it to prevent it spreading. U know?
The doctor also saw how dehydrated I am and how I am not absorbing anything. That is because my GI system is basically “dead.” Therefore, we need to do something to help me. The doctor prescribed me pedialyte in hope that it will help me. So… I have pedialyte freezer pops. He is hoping that since they dissolve in your mouth, hopefully I will absorb something from them. I told them that I always drink GATORADE, which he was happy about. But, he told me that with my condition, I can’t have sugars. So… that is why pedialyte is probably so much better for me. So… we will see if it gets better with taking that. He said that I don’t have to get the whole thing down, but he will take whatever he can get.
I have to be so careful what I eat because I can’t have sugars and I can’t have too much fat even though I am so thin and desperately need the calories. Fats are the worst for me, as they really “plug” me up. They want me to have as much carbs as possible, as well as proteins instead.
I then went to the final doctor for today, which was the transplant doctor. I was late to him because the doctors here take their time with you and don’t chase you out. They keep you and let you ask every single question you may have. They never think that any question is a “stupid” question. I never saw anything like it because if I was in NY, you know that I would clearly be on a time schedule… as I would definitely be in and out of the appointment in no time because they barely take anytime whatsoever with you. These doctors are really amazing. I am like literally in each appointment with each doc for 2 hours each… no joke.
Anyway… since we were running late to the transplant doc, I was so afraid that the doc wouldn’t take us. After all, if it was NY and we were late, they would definitely say TOO BAD!! So, I had the doctor’s office that I was in before call over and tell them that I was “held up” and I was on my way. This way the doctor knew that I was on my way and knew that it wasn’t my fault either. But guess what? The other appointment was in another building of the hospital. So you know how I got there? We took a golf cart there. I couldn’t believe it. When my father told me to get on the golf cart and it was going to take us there… I thought he was honestly kidding me. But, he was apparently not. This hospital is really amazing. They don’t make you walk from place to place at all. They try to make it as “Easy” for you as possible and therefore, they transfer you on “golf carts.” It really is great because it surely beat walking. U know?
Well… I went to the next doctor and I am literally in love with my transplant doctor even though I didn’t get the “best” news. First of all, the doctor told me that I am lucky to be a female. He said that if I was a male, I would definitely have been dead already. He also said that he is deathly afraid for my life because I am borderline ready to die. He basically told my father that if I drop anymore, I will die. I can’t afford to drop because according to him, I will definitely die. If I was a male, the lowest you can drop in BMI is 13. Anything lower is death. There has really been no one that has lived lower than that and therefore 13 is “death” for a male. So… luckily, I am a female because I am lower than that, as my level is 12.6. Females have a little more wiggle room, as they can live longer with less “fat.” They can live until they drop down to 12, but anything lower than that… it is certain death. So… with my level being 12.6… it really is dangerously low and the doctor is extremely afraid that I am going to die. He said that “it is very possible that I can die anytime and if I drop any lower, it is extremely dangerous.”
When my dad heard this, he kinda went bizerk. I can’t blame him because I am his daughter. I tried to make the “best” of the situation, but after my dad heard this… he didn’t really want to hear anything else. He really was in a “bad” mood afterwards. I started saying how “I will be ok” and how “At least I have a good attitude because attitude plays a role in everything.” Even though the doctor agreed that having a good attitude definitely helps you, my dad didn’t want to hear it. As far as he was concerned, I was going to die and something had to be done.
The doctor said that something has to be done and done urgently because I am literally dying. He said that I can very easily die at the state that I am in now. If I drop any lower, he said that it will be “certain death.” He told me how desperately I need the transplant, but we have some huge issues with it. We don’t know if I will get it in time and it is also not a quick and easy process. It is lengthy process and they just don’t give it to everyone. He is afraid that due to my underlying illness and me being on all those medications, especially the methadone and such, he is afraid that they won’t give me the transplant. He is afraid they won’t give me the transplant because I can very easily kill the new organs like these organs died. I am on Methadone, which is the WORST medicine to be on. Unfortunately it is the BEST medicine to be on for my neurological disease though. Yet… it KILLS your GI SYSTEM. So… I am literally put between a rock and a hard plate. So… although we are really hoping that I get the transplant, the doctor is afraid I won’t get it because of this. I am meeting with the transplant team later on this week and will know more, but he is very afraid about this very issue. If I don’t get the transplant, I will surely die. It is like I am screwed either way because I desperately need the transplant to live and I can’t come off the medicines either. I am so very scared.
In the meantime, the doctor wants to put tubes in me. However, it has to be done in the hospital and therefore, I will have to return to Cali in 2 weeks to have it done. It will hopefully “buy” us some time, but he doesn’t even know if it will work. He highly doubts it, but it is something we have to “try” because we have to try everything to “buy” us time because I am quickly running out of time and quickly dying. The doctor only wants me to do it when he is running the inpatient service, which is one week every 3 weeks. So… he is making me come back in 2 weeks to have it done. I don’t know how on earth I am going to afford all of this. I really gotta find a way because between this and everything else, I don’t know what is going to happen. My dad wanted me to go into the hospital this week to have it done, but it really wasn’t enough time between the holiday being here and how I am feeling. I am feeling worse than ever and therefore the doctor didn’t really want to do it when I am doing this “poorly” either because it will wreak havoc on my illness too and if it is already causing me lots of problems, it will be worse. He is hoping that by waiting a while, I will be able to have some ketamine, which will “calm” it down a bit too because the tubes are not comfortable.
The tube will literally go in my nose and bypass my stomach and go into my intestines. The doc said that he would do it under general anesthesia so that I don’t feel it. However, we don’t even know if it will work. They will then try putting some food in it as well and see if I can tolerate it. However, since my entire GI system is dead including my stomach and intestines, we don’t think I am going to tolerate it. But, we have to try. We are afraid that even though it is bypassing my stomach, it is still going to be intolerable since my intestines are “dead” as well. The intestines don’t move and therefore, the food will probably become stuck. That is the worst feeling because it forms a “bag” there and I get so distended. It is like I am “pregnant” and it not only makes me feel uncomfortable, but it also causes my underlying neurological disease to act up and spread because of the “trauma” to my body. The doctor said that we would “try” it and if I can’t take it, we will stop it. However, if I can tolerate it and such, he will then do surgery to permanently implant the tube so that I won’t have it coming out of nose anymore.
I really don’t want the tube in a way though because that means I will NEVER eat again. Since it bypasses my stomach, I will kinda always be hungry. Since you are kinda “satisfied” and “full” by tasting the food and by having the food in your stomach, I will never have that feeling because I will never have another morsel of food in my mouth and in my stomach again. Therefore, my stomach will always have stomach pains and have hunger pains. Even though I might be fed through my intestines, I still won’t be “full” or satisfied because of this. So… it could be quite unpleasant… u know? I don’t want to live like this. Plus… whenever I go out with friends or something, I will only be able to “watch” other people eat. I will never be able to eat again. It will only make me more hungry. The doctor said there are ways to avoid the “smell” of the food so that it doesn’t make me so hungry such as putting mint Vaseline and stuff under my nose, but still… it isn’t the life that I want to lead. I just want to be NORMAL. U know?
This is definitely not the life that I want to live. Wanna hear something funny though? The doctor asked me about one of the injections that they prescribed to me known as OCTREOTIDE. I told them that is one drug I am no way going to take EVER again. The doctor started to laugh and asked me why I was saying this. But, it was as if he knew exactly what I was going to say. I told him that it was the most painful injection EVER. It is like fire being put into you and it even has the name of being “liquid fire.” Plus, it makes you so very itchy too. When I took it, I literally hit the roof. Even with Benadryl… it didn’t do anything to lessen the side-effects. It wasn’t like it really did anything to “help” anyway… so it was definitely not worth it. The doctor definitely knew where I was coming from and therefore, he didn’t press me for it. Thank goodness.
So… now I am basically up to God’s hands. I really need the transplant and it is up to him to give it to me. I am really hoping that they give it to me. They told me how they usually do about 2-3 transplants a year. I asked how successful they have been, but they told me that the last one that they did, which was last year, happened to fail. It wasn’t what I wanted to hear, but it is life. They are the only hospital really to do the transplant and then put you on anti-rejection drugs that are not “steroid” based, which is good. We were also told that I would have to be here for a while after the transplant until I am “stabile.” I don’t know how on earth we are going to pull that off. My dad really needs to be able to work and yet, someone has to be able to stay with me. It doesn’t necessarily have to be my “dad” who stays with me, but someone definitely has to be with me. Even though I would really want my dad with me, I know that my dad can’t stay with me because he has to work too. I will be here for a month at the very least to a couple of months and it will be extremely expensive. I have no idea how on earth we are going to even afford this. IF my dad can’t work, the business is definitely going to go under and therefore, we will lose everything because we will have absolutely no income whatsoever. So… we really have to find a way to affording this transplant, as well as a way of getting someone to stay with me. Everything is just so complicated. When it rains, it certainly does poor. I don’t know how on earth this is all going to work out.
I asked the doctor if I can remain at home until the transplant becomes available, but he said that it is all up to the “team” and I have to discuss it with them when I meet with them. It all depends on how long the organs can be viable because they can only be viable for so long. It also depends how fast I can get here when I get the page. I told him that I think I would be able to get here in like 8 hours, but I doubt it will be doable. I know that anything that would make it “easier” for me and that will enable me to live a more “normal” life until the transplant will not happen. U know?
So… that is my life in a nut shell for today. A lot has certainly happened for today. I am in so much pain and so very scared. I don’t know what to do and don’t know what is going to happen to me. I am so very scared. All I know is that I didn’t get the BEST news today and that I desperately need something to be done and done quickly because I am running out of time. My dad and I have so much on our minds to think about. I know my dad has so much on his mind too because not only is he so “jumpy” and not able to really be talked to, but it took him so long to get home from the hospital. We have been to and from this hospital so many times already and yet, he kept getting off the route and parkway saying we were going the “wrong way.” Meanwhile, we were going the “right” way, but he said that he never saw this area before. You know how many times we passed this area before since we have been back and forth to the hospital so many times already? He just couldn’t remember and recognize the way home. I can’t tell you how many times we had to U-turn around because he thought he was going the wrong way. It even got to the point that he was calling the GPS a “liar.” Yet, even though I knew and saw that he had so much on his mind, he still was trying to cheer me up in the car and make me “smile.” He always likes to joke around and everything just to make me laugh and everything. He never likes to see me upset. So… even though he can be very annoying at times, he does try to make me happy.
I said to my dad though later on tonight “You are so lucky that I am a girl.” My dad said “So are you!” I told him though that “It really doesn’t matter to me because the only real reason that I am trying so hard is because of him.” I am honestly tired of suffering. I am tired of fighting. I honestly don’t want to die, but I don’t know how much I can go on. I don’t know how much “fighting” power I have left. But, if it wasn’t for my dad… I can tell you this much… I definitely would have given up a long time ago. I just don’t want to hurt my dad because I know how much it means to my dad. I know if something happens to me, my dad would NEVER recover. I never want to hurt him.
Tomorrow is another day. I have an appointment with the stomach pacemaker and for the MRI. I don’t know if the MRI is a definite though because I still have to hear if I have “metal” in my back. If I don’t… It is like an 1 1/2 hour scan. I don’t know how I am going to tolerate being in the “tube” for that long because it is a “closed” MRI. I can’t sit still because of the pain and I don’t know how I am going to manage to sit still for that length of time. I asked if they had any OPEN MRI’S but they said they only had the “tube” MRIs. I am not claustrophobic, but I hate being put in them. it is really freaky.
I have an appointment tomorrow with the stomach pacemaker surgeon, and I don’t know honestly why I am going. All the doctors insist that it really has “poor” results, but I am going because it is still an available option. However, even if it does work, it will only work on the stomach, so I would still have the issue with the rest of my GI system being “dead.” It probably is useless to get because it hasn’t been proven to work, but they said that they would do it since there really isn’t anything left to do. However, it can very easily spread my underlying disease too because of the surgery and then the pacemaker that is implanted can spread it as well since it is very traumatic and I don’t really have any cushioning. So… I am probably just wasting my time going tomorrow, but it is something I need to check out for myself. Otherwise I would always be wondering if I checked out ALL my options even though the docs said that it wouldn’t work. U know?
Well… gonna get some rest. I really need to start sorting things out. I need to figure out how I am going to pay for all this as well. If anyone has any ideas, please feel free to let me know. I am desperate.
I wanna thank everyone who has been so helpful so far. It is because of people like you that I continue on and continue to push onward. People think that I am really strong… but in reality… I am only strong and get my strength because of people like you. Without you and other people, I definitely wouldn’t be here today. You really give me reason to continue on. It is a really difficult and scary time in my life. However, you and others help make it easier. You give me support and encouragement to push onward and to overcome those difficult hurdles… you give me the encouragement to continue to strive to survive and I can’t thank you and all those who have supported me enough. I love you guys and forever will be grateful!