Please help SAVE MY LIFE!

July 22, 2012

on July 23, 2012



I just wanted to write and let you know that tomorrow is the big day.  I am leaving in the morning to go to the hospital for the big surgery.  I am so very nervous, but this is what has to be done.  The surgery will be so very important because it will tell us a lot of what is going to happen. Not only is the doctor going to explore exactly what is going on with me, but the doctor is going to hopefully be able to make a definitive answer as to whether I will need the transplant or not.  The doctor is 99.9% sure that it will be needed, but this is needed to confirm it.  I need a new stomach, esophagus, small intestine, and large intestine, as I suffer from severe gastroparesis and they are really paralyzed.  My stomach is essentially “dead” and I cannot swallow.  Nothing at all moves past the stomach and the intestines do not really move anything along either.  It really isn’t good.

I am really nervous about tomorrow, but my dad has been so terrific with trying to keep me “calm” and make me feel as “good” as can be for tomorrow.  He really has done everything that he can to make me as “happy” as possible.  I can’t thank him enough for everything that he has done for me.  I don’t know what I would do without him.  He really means the world to me.  If it wasn’t for him, I definitely wouldn’t be here today.  He is not only my “dad,” but he is my “hero” and best friend.  I love him so very much.  That is one of the reasons why I want to get better so badly.  I want to get better for my dad because I know how much it hurts him that I am sick.  I see it in his eyes how much it hurts him that he can’t do anything in his power to “help” the situation because his hands are tied.  My dad would do anything… even cut off his hands… if it meant me getting well.  But, unfortunately, no matter what my dad does, he really doesn’t have the “power” to make me better medically.  So… he does whatever can to make me better in all other aspects and to make me as “happy” as I can be because it is so difficult to be in my shoes.  He knows I have a lot going on and everything and therefore, he really tried to take my mind off of the bad stuff and make me laugh and be happy. Having this illness is definitely no walk in the park.  It is a struggle every day, and I never get a break from it.  But, knowing that I have my dad with me by my side… it definitely does help.

My dad has really been awesome throughout this whole entire process.  Today, I have gotten a lot of texts from friends wishing me “luck” and such.  So you know hat my dad did? He thought he would be funny and “cool” too and he ended up texting me too.  He texted me the sweetest thing.  He told me how much he loved me and how much he wishes me luck and how he will see me tomorrow. He is certainly the best dad in the whole entire world.  My dad is certainly the coolest.  That was the sweetest thing he has done for me. We did a lot today.

My dad and I did a lot today.  He really made today go great.  We went to the pier, sat there, and watched a little show that a magician did there. We watched the boats, ducks, birds, etc. We walked, talked, and saw Alcatraz. It was really nice. It was the PERFECT DAY. We did go and try to see the sea lions because I really wanted to see them, but they weren’t out. We did a little shopping on the pier as well since they had tons of little shops on the pier.  I bought him a ceramic mouse that was dressed up as a “prisoner” because of Alcatraz so that he could always remember the day.  I felt it fit him perfectly because of what he does for a living.

I also went into the coolest shop that had all this “dog” stuff.  I have a puggle at home and he is so spoiled rotten.  He only eats “gourmet” and he is everyones favorite. He is my dad’s best friend and he is incredibly smart. My dad thinks that my dog can tell time because he wakes my dad up for work or to go to the bathroom depending on what the time says on the clock.  If my dad oversleeps, my dad can depend on my dog to wake him up.  Plus, he is so smart that he can figure out how to do everything. He knows how to open doors, get his snacks out of jars, etc.  He is so smart in that we can leave him home for over 12 hours and never have to worry about him having an accident in the house.  He is really an amazing dog.  Anyway, since my dog is a “puggle,” he is a mixed designer breed.  Therefore, I can’t get a lot of things with him on it.  So, I found a sign to hang up that says “A spoiled rotten puggle lives here.”  Of course I bought it because it isn’t far from the truth.  I also bought him a cookie in the shape of a prisoner because it is from Alcatraz.  I can’t wait to give it to him because he loves these fancy cookies.  I just hope it makes it home without getting ruined.

It was absolutely beautiful weather today.  However, my dad is so burnt from today’s outing, as he is so sunburned.  He looks like a “tomato” because his face, neck, and arms are all red. I didn’t get color at all, which is strange because he was literally right by my side the entire time. I can’t understand how he got so much color and I got absolutely nothing. I am still as pale as ever and as a result, my dad is going around calling me “snow white!” He even said my name should’ve been “Snow” instead of my real name. He really tried to make me happy.

I didn’t think it was going to be so nice though because I thought that I missed out on doing anything in San Francisco.  I thought I missed out on seeing anything because due to my disease, I am extremely hypersensitive and can only go out in the perfect weather.  However, San Francisco is normally chilly and windy, which is not good for me.  However, yesterday had like the perfect weather, as it was like close to 90 degrees, which it never really is. They said it was unusual for that to happen, as it was the warmest day of the year. But, I was way too sick yesterday to do anything. I really thought I wouldn’t be able to do anything or see anything at the wharf because of the weather, but it was absolutely gorgeous today despite the temperature saying it was only in the 60s. It felt much warmer than that. It was quite warm and no wind, which was great because I was as to tolerate it.

I have been suffering from horrible and excruciating headaches lately. I have been getting the worst migraines. I think it’s because of all the stress I have been under these past couple of days with everything that is going on such as knowing that I will have to come back like in 2 weeks for another procedure and to have tubes put in me (They are literally going to starve me for a week while they try to feed me in a tube that goes from my nose directly into my intestines and bypasses my stomach.  I will only be able to get in the tube like 10 cc, which would be like 300 calories. I wouldn’t be able to eat anything by mouth during this week so essentially… They will be starving me because all I will be doing is consuming 300 calories a day, which is nothing.  They don’t even know if my intestines will be able to tolerate it or it will just form a “bag” there.  They don’t even know if it will startup my underlying neurological illness or autonomic dysfunction.  If I can tolerate it, then they will surgically put the tube in me so that I can get the 300 calories through the 10 cc of food in the tube while I eat too). I also have been dealing with the news that I may have a rare disease as well that will explain all this, but I won’t know for sure until another 2 weeks or so. I also most likely need to have my brain tumor taken out too. I also have the transplant to worry about also. Finally, I have the surgery tomorrow, which is really scaring and bothering me because it will determine a lot if things such as making the transplant a definite.

The surgery is very scary because not only is it scary in general whenever you go for surgery, but my bloods are so very bad and I can literally have cardiac arrest any minute. My heart bloods are so low that’s easy to have an arrhythmia. I’m really afraid that my heart won’t be able to tolerate the surgery tomorrow because it’s mega surgery and also a test. It’s like 10 hours long and under general anesthesia. It really freaks me out. It really freaks me out knowing that the surgery is also a test, but it’s like 10 hours long. The first 5 or so hours is under general anesthesia. They will be putting the tubes and probes in me. The second half of the surgery is like 6 hours and I will be semi-awake. The doctor said that they will try to make me as comfortable as possible, but it freaks me out to think I’m going to be semi-awake with tubes coming out of me for so long. You know? I hope I’m not going to be so uncomfortable. I hope I’m going to be ok.

My dad has been joking around with me by saying how he is going back to the wharf to walk around while I am in the surgery since I am going to be in the surgery for 10 hours. After all, he says, “What am I going to be doing for that long of a time?”  I know he is only joking, but I still tell him over and over again that he better be in the waiting room watching those “lights” by my name just in case something should happen to me.  This hospital has a really awesome system in that when a person goes for surgery, they get lights by their name so that people waiting in the “waiting room” can know exactly what is going on.  It kinda takes away the anxiety of not knowing exactly what is going on to your “loved one” because depending on the stage of surgery such as the “opening”, “closing”, etc., the lights change colors to state exactly the progress that is being made.  I think this is an awesome idea because it can really be anxiety provoking for family members sitting in a waiting room to not know what exactly is going on in the operating room or how much longer the surgery is going to be.  In this way, at least they have an idea.

I did tell my dad though that I will give him some things to do.  I know how my dad loves the iPad, so I am charging it up for him. That should keep him busy.  As long as he can get online, it will keep him busy.

I haven’t been feeling well though tonight.  Besides the headaches, my autonomic dysfunction is really stirring up. I am suffering from “blistering” and cold sweats as well.  I don’t know if it is because I am nervous or because of something else.  I just hope my body just “calms” down because I can’t go into surgery like this.  If my body is acting up like this already, I don’t know how I am going to tolerate the surgery because anything that they do to me will cause me more pain and more havoc than it would normally.  I usually can’t tolerate IVs, but if my body is already on “edge,” I really won’t be able to tolerate it.  I am really hypersensitive and therefore, a simple needle stick is like someone sticking a knife through me.  I don’t know how my body is going to cooperate if it is already acting up.

We have to leave really early for the hospital tomorrow morning because we first have to pick up the rental car so we can drive to the hospital.  My dad wants to leave the hotel at 5:30 in the morning, so you can imagine the time that I will have to get up.  Before the surgery, I have an appointment with another doctor because the endocrinologist wants to see me.  She is coming back from her vacation early just to meet me.  She even normally doesn’t even see patients at the hour she is meeting me, but she is making it her business to see me at that hour because she says that it is “important.”  I can’t believe how doctors really have gone out of their way to really help me out here. It really is amazing.  I never had such great doctors.  The doctor will be talking to me about the brain tumor since it is situated on the pituitary gland and will also be talking to me about my bones as well, as they are afraid that I am going to suffer a life-threatening fracture.  The brain tumor is severely deteriorating my bones and as a result, I am extremely fragile.  Unfortunately, the medicine that I take for my severe gastroparesis happens to “feed” the tumor.  So… the tumor has been causing a lot of problems such as headaches, eyesight problems, and bone deterioration and as a result, it must come out.  So… we will see what happens after meeting with the doctor.  I am just so fortunate that I have these doctors that are not only so knowledgeable, but they are willing to go out of their way to meet with me because they normally don’t have appointments when they have been seeing me.

After the appointment with the endocrinologist tomorrow morning, I will be going directly to the surgical floor.  Even though I have been taking medication that the doctor gave me to try to raise my bloods because my bloods have come back so very low and I can easily go into cardiac arrest at my levels, the doctor does want to give me some meds by IV.  It is really going to be hard on my veins because it is hard on the normal person, as it burns the veins up in a normal person.  With me being so hypersensitive, it will be even worse for me.  I really fear that part because I know it is painful for the normal person.  So… I know it is going to be even worse for me.  But, what can I do?  I have to do it, right?  I have no other choice.

I can’t eat or drink anything anymore tonight.  The doctor didn’t want me to take anything by mouth before the surgery, which included any medications. However, since I am on so many opioids, they didn’t want me to have “withdrawal,” so they are letting me take those medications.  They also are allowing me to take the medications with sips of soda because I can only take the pills with carbonated drinks because of the difficulty swallowing.  Even with the carbonation, it has gotten difficult to swallow.  However, without the soda, I would really have no chance of getting them down.  So, they are allowing me to take the pills with sips of soda even though they preferred me not to.

During the surgery, I am also going to be getting ketamine.  So… even though I may not be in my per se “coma,” at least I will still be getting some ketamine.  I am really looking forward to that because perhaps that will “simmer” my illness down a bit because ketamine in a high enough dose has been shown to perhaps stop the progression of the disease and maybe even reverse the disease.  However, the amount of ketamine that would do that is not FDA approved and therefore, I would have to go out of the country to do it.  I am still awaiting the approval for that, but in the meantime, I am supposed to go to Florida to get a more intensive coma treatment of ketamine even though I do undergo ketamine in New York.  These comas won’t “cure” me, but hopefully they will help me BIG time.  They are also giving me ketamine during the surgery because it is supposed to be given whenever I go for any traumatic event because my disease spreads through trauma and the bigger the traumatic event, the more likely it is to spread.  Surgery is one of the biggest traumatic events that you can have and therefore, it will hopefully stop the disease from spreading even more since my disease does spread like a wildflower.

Also, during the surgery the doctor is going to give me the injection of Octreotide that I was giving myself before at home.  The doctor had given me that to combat the brain tumor, but when I took it at home, I had a huge allergic reaction.  I ended up breaking into welts and my abdomen swelled up.  I became very itchy and my throat felt funny.  Luckily, I was able to find a Benedryl because I was suffering from a severe allergic reaction.  After speaking with the doctor though, she said that I shouldn’t take the medication again, as she would try it during the surgery so that she could see exactly what was happening.  Therefore, it would also be in a monitored environment because if something would happen, at least it could be taken care of immediately and hopefully nothing “bad” would happen.  The doctor is hoping that perhaps by changing the technique of the injection or perhaps the concentration, perhaps I can still tolerate and take this medication because it is so very important for the brain tumor because it is “growing” and getting worse, especially since I take other medication that “feed” the brain tumor.  We really have our hands tied if I can’t take this medication because there really isn’t any other medication that can be used to “stop” the tumor from growing.  So… we will have to see what happens.  I guess this will also determine how urgent the brain surgery to remove the tumor will have to be.

Wanna hear something really weird?  I have containers of medication that I have been taking.  I divided up my medication into separate containers so that each time I have to take medication or my dad has to take his medication, it is in a separate vial.  I labeled each vial accordingly, as to whether it was my vial or my dad’s vial… and to what time of the day’s medication it was such as whether it was morning, afternoon, or evening.  Anyway, whenever we are done with a vial, my dad has been collecting them instead of throwing them out.  It is really funny.  He has been lining them up on the desk and keeping count. It is keeping him busy and it is his “creation.” I can’t believe what my dad is capable of doing. Therefore, I have taken a picture and I am including it below:Image

Well… going to get going.  I gotta rest because tomorrow morning is going to be a BIG day.  I will write again when I am “up” to it.  Wish me luck!!  Thanks so much for all your support and encouragement because it really has helped me during this difficult time.  You can’t imagine how hard it has been on me, but knowing that I have your support, it really makes a huge difference.

Love always,



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