Just wanted to give you an update since more news is known about the upcoming trip to California since I spoke to my head doctor tonight. Every time I think that it can’t get any worse… it somehow does. I just can’t believe everything that has been happening, especially since I have only been home from California for such a few days. In fact, with everything happening and such, I couldn’t remember when I came home from California. I couldn’t remember if I just came home this past weekend or the previous weekend because so much has been happening…. way too much than is possible for a few days. But, it is amazing that it has only been a few days and I just got home this past weekend because of everything that has been happening. My head is literally spinning with everything going on. I think it is going to spin right off my shoulders, so if you find a headless body, it will probably be me.
I can’t believe that I have just gotten home this past weekend and I am already turning around to go back to California. It is like my “home away from home.” I know how detrimental it is that I get back to California and how imperative it is that I get back ASAP. I am rapidly deteriorating and if I don’t get back soon… I fear that I am going to die. I really don’t have much longer. I know that it is getting really “bad” because I can feel it. You wouldn’t understand it unless you are really going through it, but it is something you just “know.” My body is just “giving in.” I can’t take the suffering anymore. My body is just getting so tired of suffering, so tired of fighting. I am so mentally, physically, and emotionally exhausted.
Every time I think that things are going to get better, they just continue to worsen. I just don’t know how much longer I can take. Even the doctor confirmed that it is really getting “bad”… worse than it has ever been because my head doc has lost his sense of humor and he also told me frankly that I am “not doing good and need to get to California NOW because I am dying!” When I asked him “If I am going to be ok?” The doctor even responded with an adamant statement of “NO!” I am so very scared.
I know things are so bad and I take it seriously too because it is coming from my doctors in Stanford. These doctors happen to be the BEST doctors in the world. I love my doctors there. I wouldn’t trade them in for anything. The only thing that stinks is that they are on the other side of the country and it is such an inconvenience to get there. However, they are the best of the best, as the hospital is ranked very highly in the United States. They have pioneered so many treatments there, which I am also going to be undergoing such as the snail venom. They do all high-risk surgeries and surgeries that no other hospitals in the country perform such as the full GI transplant that I am having. Only 8 hospitals in the country do this transplant, and they are one of them. So… if they are telling me to “worry”… I think it is time to really “worry!”
I spoke to my head doctor tonight from California. It appears that plans are being made and everything is getting in place for me to arrive in California. My doctors in California have even been having meetings together and talking in order to arrange everything and get everything organized so that everything will be situated and everyone will be on board with all the plans when I arrive. However, it is all contingent on the fact that I have the funds to go, as right now I don’t have the money. I just don’t know how we are going to afford this.
The doctor doesn’t like what is going on with me at all. He really said that I “don’t have much longer” and it is imperative that I get to California as soon as possible. My little body is shutting down and it just can’t take things much longer. I am having such a difficult time swallowing, as I can literally not swallow anything anymore, not even liquids. I was having trouble swallowing sucking candy before I left for California, but I thought it was just the candy. Then, when I was in California and couldn’t swallow, I thought it was perhaps the coffee and I just didn’t like the taste. However, it continued to worsen when I got home and it is at the point now where I can’t swallow basically anything. It is really worrying the doctor.
In addition, I have been having a lot of mucous as stool and the mucous has been black. They think that I have bleeding somewhere in my GI tract, but they don’t know where. They say it is imperative to find out what is going on because it is not normal to keep expelling mucous and have this bleeding. So, when I go to California, they will be doing this investigating. I don’t know how they are going to be able to do this though because the last time they tried to do a colonoscopy in Pennsylvania, it couldn’t be done. They gave me a NG tube to try to “prep” me and after placing the NG tube up my nose and into my stomach, the tube ended up backing up after pouring only less than 1/4 of a gallon of that “Go Litely” stuff that makes you really go to the bathroom. My stomach was so bad that it made the tube back up. So they had to remove the tube and that was that. So… I wonder what they are going to do in California to find out what is going on. So… I guess we will find out when we go.
In addition, I told the doctor about how foul my gas smells. I told him how I never smelled something so bad. Sorry to sound so disgusting, but is true. When I told the doctor this, he told me that I have some sought of BAD bacteria in me that is taking over. He said that I am in really BAD shape and need help ASAP. I am really borderline death between all this and my level being so low too as I am only a 12.2 level and girls can’t live below 12.
Even though I am doing so horrible and it is imperative that I go to the hospital ASAP, my head doctor is only in the hospital at certain times. He doesn’t really want another doctor taking care of me because he knows my case and he is the BEST. Therefore, I have to wait til he is back in the hospital, which is on September 23rd. I am so very scared to go to California. I will be arriving in California on Sunday and the doctor will be admitting me into the hospital on Monday. The doctor said that I could go straight to the hospital and be admitted Sunday night, but I will be tired and in pain and exhausted from all the traveling. By the time we arrive in California, it is just better if I get admitted the next day because this way I can “relax” a little and regroup. After all, I figured even if I went into the hospital Sunday night, it wouldn’t be like they would do anything anyway that night. They would wait til Monday. So… I will just be admitted first thing Monday morning.
September 23rd isn’t too far away, but I still have time that I need to “hang” in there and make it. Each day is a day that I need to remain strong and a day to battle staying alive. After all, we never know from one day to the next if I am going to make it or not. There are so many times we don’t even know if I am going to make it through the night. Everything is just so touch and go. So… I just gotta make it til then. Hopefully that will also give me some time to get some money together also because I definitely can’t afford it as of now.
Not only will I be admitted on Monday, but I will undergo surgery Monday as well. Due to my condition, they are going to basically “shut my entire body down.” They are going to put my entire body under general anesthesia and bypass because of how it is doing. It just isn’t safe any other way. When the doctor told me this, it kinda freaked me out because to hear that your body is so bad that it won’t survive surgery unless you are on total “bypass” and such… it really puts a scare in you. You know?
The doctor will be placing tubes in me. He wants to see if there is any viable piece of small intestine in me. Even though my entire GI system (stomach, small intestine, large intestine, etc.) are dead, he wants to see if perhaps he can find even a tiny piece of viable small intestine if goes low enough into the small intestine. So… he will bypass the esophagus, stomach, and most of the small intestine. They will then tube feed me and see if I can “accept” it or not. They will see if it will be too “painful” or not, especially since I have this underlying neurological disease. They will see if it stirs up my autonomic dysfunction because anything that is “foreign” stirs up my autonomic dysfunction and causes further problems because of my extreme hypersensitivity. They will see if the stuff forms a “bag” because my intestines are so bad that it will have no where else to go. If any of this happens, it will be considered a “failure” and be removed. If it should work, then I will have another operation and they will permanently and surgically place the tube through my abdomen.
The chance of the tubes working is extremely small. I have less than a 20% chance of this happening and working, but they are willing to try this because they have no other choice. They are hoping that this will buy them some time and perhaps also make me stronger too. I definitely need to be stronger because I am so weak. It would definitely help with the transplant because it is so risky and such. I will need all my strength for it. Plus, they want to put a pump in me with snail venom, and they can’t do that without getting me to gain some weight.
In a way, I am even more fearful for the tube to work because if it does, I will never then eat or drink ever again. Therefore, my stomach will be rumbling and hungry all the time since feeling “full” isn’t just about nourishing your body. It is about putting it in your stomach and feeling it in there, as well as putting it in your mouth. Since I won’t have that anymore, I will always be hungry.
The doctor said that we will work together as a “team.” I told the doctor how fearful I am of the tube. I told him how scared I am that I am going to be in so much pain and I am scared that they won’t listen to me when I tell them to stop the “tube” feeds and such. I also told him how I am scared that the are just going to leave me there because of what has happened in the past in New York. I explained to them how in New York, doctors really don’t listen to patients. When you need to talk to them, even when you are suffering, it takes them forever to come. In the meantime… you are there suffering. Plus, whenever you don’t feel well and want something that is different from the doctor in New York wants, they always end up winning out because they never listen to the patient. That is another thing that scares me.
After expressing these fears to the doctor, the doctor said to me that I had nothing to be afraid about. He said that we are going to “work together.” He said we are going to go so slowly. He said “the feeds are going to be so slow and so little, especially since I feel absolutely everything that goes into me.” I even feel all the IV saline and solution that goes through my veins because I am so hypersensitive. The doctor said to me that if “if I want it stopped, they will stop it immediately.” He also assured me that if I needed him, he would be there immediately. So, he really made me feel comfortable and made me feel better knowing that he wasn’t going to just “leave” me and do things his way like it has been done before in New York, which has led to further suffering and agony. You know?
I really have the most wonderful doctors. He is really the best. He is setting everything up and trying to make it as “easy” as possible for me, as well as so I don’t have to worry about it. He is arranging all the other procedures that I will be having such as getting the snail venom, as well as continuing the transplant process since that probably is my only chance of living even though it is so radical, risky, and dangerous. It is the transplant with the highest rate of rejection.
I will also be undergoing a procedure where I will be getting snail venom. Ideally it should be going into a pump. However, since I am too small for the pump, they are going to put it in my spine, and hopefully it will still do something. It is for the underlying neurological disease. It was pioneered there and used when all other treatments have failed. It treats pain by directly blocking pain signals. It blocks the nerve channels that transmit pain signals as they travel up the spine. The best thing is that it doesn’t really weaken. If this works, it should simmer my autonomic dysfunction too. It would help me get off the drugs too that are compounding my GI system shutting down as a lot of my drugs that I take for my underlying neurological disease compound shutting down my GI system. However, it is really risky as it can cause psychosis and such. It can even upturn memories that have been repressed during an earlier time. So… I have to have a psych clearance beforehand to make sure that I am “ok” to go for it.
If the snail venom should fail, they will probably place me in a 5-day ketamine coma. Even though I need an amount that is not FDA approved and have to go out of the country to receive it, they will to a more intensive dose than the one that I usually receive in New York. I usually only get ketamine for one day in New York at a time. However, in California, I will undergo the coma for 5 days in the ICU.
When I go to Cali, they are going to be working more on the transplant process as well. It is such an intensive and long process to get one. I still haven’t decided where to get it still, and I really have to make my decision soon. I have a choice whether to have it in California, Nebraska, or Indiana. Nebraska is the biggest center, as they have done like 4 a year and have a one year survival of like 92%. California does 1-2 a year and has a 1-year survival of 85%. It is all in the numbers. Also, my entire team is in California and I can get the snail venom or ketamine there too, so that is an added plus too. However, I do know that if I go to Cali, I love the doctors there. I also know that if I list there, I am so sick that I will get the organs probably within 2 weeks or so. I don’t know what would happen if I went someplace else. So… I gotta start making decisions. We also have to figure out things because it will be so expensive too. Someone will also have to be with me at the hospital for about 3 months. So… it is causing a lot of problems because there is no one really to do that because of the business. No way can my dad be away that long.
I am so very sick and a lot will be done. I am scared, but at least my dad will be with me. I just wish my mom would be with me too. At least my dad will be in the hospital all the time with me though because I have become phobic of hospitals. I know it sounds strange because I have been in the hospital so many times, but I have become petrified of them. I literally hate them.
I just hope my dad will be able to find his way back and forth to the hospital and hotel without me. I am usually his co-pilot because without my GPS system, and me he has no way of knowing how to go. I even know how to go by now to the hospital since we have been there so many times. However, he still depends on my iPhone GPS system. I am sure that he knows how to go too, but he doesn’t trust himself. However, I will have my iPhone with me and therefore, I don’t know how he is going to have the GPS system because it is in my iPhone. My dad already said to me “We better pack the GPS system from home so I know how to get to the hospital.” After all, I will end up calling my mom at home and I will be like “where is dad?” and she will be like “haven’t heard from him in days… have you?”
My dad isn’t handling things very well with me. My dad has always been the “rock” in the family. However, he is really falling apart. He tries not to show it, but he is really showing it in the way that he is angry over everything. He is extremely jumpy and he won’t talk about what is really going on or the possibility of dying. He has it that he is going “freeze” me before anything. My dad keeps saying things like “you can’t go anywhere because we won’t take care of ourselves” or “If you die, we won’t be taking our medicines” or “if you die, you wouldn’t even recognize us afterwards because we will be fat as a house.” He is constantly saying things because he is trying to keep me going. Yet, I hate when he does that.
I can’t blame him for not wanting to lose me. What parent wants to lose his or her child? But I am suffering so much. Doesn’t he think that perhaps it might be better off? At least I will be out of my suffering. But, my dad told me that he “Doesn’t care.” My dad says that he is “selfish.” I know how much he loves me and I love him too, but it is a lot of stress on me.
I spoke to a counselor about this and what has been going on. She said that my dad is already “grieving” and such. We all know that if something happened to me, my dad would NEVER recover. As for me, she said that I am in “Hopeful Denial.” The reason she said that is because I am still “hopeful” that I am going to get better. Yet, she says I am in “denial” because I still feel like this is all in my “head.” I feel like I am going to wake up and this is all going to go away. I feel like if I really wanted, I could make this all go away, as if I was in control. Even though the doctors have told me numerous times that it isn’t in my head and not in my control. I still think it is even though I know deep down that it isn’t. They say that this is how I am dealing with it. They say that since I was able to achieve everything that I set my mind to and this is something that I can’t achieve and overcome, this is my way of “still controlling” the situation. You know?
Gosh… I really need to go back to California and yet, it really is impossible. Even though everything is being scheduled, it isn’t 100% that we are going to be able to go because right now we don’t have the money to go. It really depends on a lot of factors. So… essentially my life rests in the hands of others because I need money from others in order to help pay for treatment since my family can no longer afford it. I don’t know how on earth we are going to do this because we are basically “broke!” It is really worrying me. We still have so much debt from the last trip. I don’t know how on earth we are going to survive paying for Cali to go back again in such a short time.
In addition, I am so very worried about my dad because he is working harder than ever to try to make “ends” meet. He is already working 7 days a week from like 3 AM to 7 PM. There isn’t much more that he can possibly work. He jokes around saying that he is going to “invent more hours in the day,” but in reality… you know that isn’t possible. Not only is he working like a horse, but he is also running himself ragged. He is really worrying me because he is no youngster. He is going to be 59 on Sunday and it isn’t like his job entails just sitting around. He is constantly on the “go” and his job entails all physical labor. I just don’t know how on earth my dad can keep up this pace. I am so worried that something is going to happen to him like a heart attack or something. Between the stress of what is happening with me and the stress of the business… he is a heart attack waiting to happen… not to mention that it runs in his family and everyone has been dying earlier and earlier in his family, as his father died at 66.
There is no way that my dad is going to be able to take me to California in such a short amount of time. My dad can’t just take off and go because the business suffers. When he doesn’t work, there is no money to be made and as a result, the business is definitely going to crumble. Customers aren’t going to wait around for him to return, but they will just move on. That is why my dad has the motto “the early bird catches the worm.” He knows that if you aren’t there to grab them, they are just going to move on. Therefore, I don’t know what is going to happen if he comes with me to California because not only will he be away from the business, but he will be away for awhile, which will mean no work will go out for awhile too. This will also mean no income for my family too and therefore, how are we going to pay for things such as our mortgage? We are having a hard enough time paying for things as it is because of my disease, I don’t know what we are going to do if there is no money coming in.
I am so very scared because my family has definitely suffered enough. They have given up way more than I can ever thank them for. I don’t want them to lose the business or the house because of me. If they would lose that stuff, I would NEVER forgive myself. I just don’t know what to do. My dad tries to make up all the work that he is going to be missing before we go to Cali so that it isn’t money that we “lose” out on and customers that aren’t attended to, but my dad still is catching up from the last time we went to California. Now with having to go back to California again so soon, he will have to make up that work that he will be missing too. If he hasn’t caught up with the work before, how is he going to make up this work too? He is trying to be superhuman and do EVERYTHING, but it is literally impossible. There is no way that he is going to be able to catch up on the work that he will be missing if we go back to Cali now when he has still work to catch up from the last trip. It is just snowballing out of control. I am just so very scared because I don’t want my family to suffer anymore. Like I said before, if anything should happen to my house or my dad’s business… I would NEVER forgive myself.
With all that is happening, I didn’t want my dad to even work on his birthday, which is this coming Sunday. He has done so very much for me and has been working himself ragged. He works so hard that he literally comes home and collapses. He is just mentally and physically exhausted. There is only so much that he can take. You know? With him doing so very much and him being such a great dad, I would really love for him to be able to relax and enjoy his very special day. He enjoys to have one day devoted just to him such as his birthday!! After all… it is his SPECIAL day and he should be treated like “royalty.”
However, he is working because of me. Since we are going to California and everything, my dad has no choice but to continue to work himself ragged, especially on a day that should be made for celebration and a day that should be a day of “R & R” for him. I would have really loved for him to have been home because I really would have loved to have spend the day with him since this can very well be the last birthday I have with him. It just isn’t fair that because of me he can’t enjoy a day that is meant to be a day of celebration and a day meant to be “special”. I feel so bad for what I do to my dad. My dad says that he “doesn’t mind at all,” but I mind because he does so much for me and it isn’t fair.
I doubt very much if I will be around for his next birthday, so I wanted to make it as special as I could. I already bought him shirts and gave it to him because he needed them for California. I figured that since he needed clothes for Cali and he wouldn’t get them by himself, I would treat it to him so that he would have them. At least it was something he could definitely use. I also wanted to make a cake for him and have a clambake or something for him. I can’t really “go out” and celebrate his birthday, which is something I would love to do because my disease and illness limits me and kinda forces me to stay in my house, so I would like to make it as nice as possible in the house. I can’t even go out to dinner, which I would love to do, so I wanted to make him a really nice meal. After all, he does so much for me and I just want to show him how much I love him, appreciate him, and how wonderful he is. My dad is not only my “dad,” but he is my best friend, my “hero” and my idol. I would definitely not be here if it wasn’t for him. My dad is definitely one of a kind.
Gosh… so much is doing… I can’t even tell u how much I can’t take it anymore. I am reading a great book though. I just started it, but if it is like any of his other books, then it is going to be great. It is by the same author who wrote TUESDAYS WITH MORRIE and THE FIVE PEOPLE YOU MEET IN HEAVEN, which is Mitch Albom. The book I am reading is called THE TIMEKEEPER. The inventor of the world’s first clock is punished for trying to measure God’s greatest gift. He is banished to a cave for centuries and forced to listen to the voices of all who come after him seeking more days, more years. Eventually, with his soul nearly broken, Father Time is granted his freedom, along with a magical hourglass and a mission: a chance to redeem himself by teaching two earthly people the true meaning of time. He teaches one a teenage girl who is about to give up on life, the other a wealthy old businessman who wants to live forever. To save himself, he must save them both. And stop the world to do so.
There is so much to do and so little time before the 23rd. I just hope that I can accomplish everything. I also have to get a new suitcase because I not only need a suitcase because it is ripped, but I need to get a little suitcase so I can bring it to the hospital. But, like always… that is more money. Why does everything have to cost money? I wonder what life would be like if money didn’t exist.
Well, going to rest. I am not feeling well and going to rest. Thanks again for standing by my side. Like I said before… I am so very scared. Not just scared for me, but very scared for my family, especially for my dad because I know that if anything happens to me… my dad would never recover. I am really pushing on because of him. I don’t want to let him down. I really am hoping for a brighter tomorrow even though the road is difficult. Yet, it is people like you that give me the STRENGTH to continue on.