I am so sorry that I haven’t been in touch sooner. I know that I promised that I would be keeping in touch, but things have been so horrible. I have been feeling so horrible and I also got the worst news. It appears that every time I think that it can’t get any worse… it somehow does. You know MURPHY’S LAW? They should change it to be MIRSKY’S Law (my last name) because it appears anything and everything that can go wrong with me does go wrong. But… since I haven’t really talked to you in awhile, I am so glad that I got this opportunity to finally “catch up” with you… even if it is only for a little bit.
To begin with, I just got the worst news. I wasn’t honestly expecting it at all, and I am really hit hard with the news. I got the news that my “best” friend has died. When I was in the hospital one time many years ago, I met a very dear person who was my roommate. She was diagnosed with Cancer at the time, and we became the best of friends. I couldn’t have been blessed with a better friend because no matter how bad things got, she was always there for me. She was a bit older than me, as she was about 14 years older than me, but she didn’t care. She spoke to me and took care of me as if I was the same exact age as she was. She always made sure that I was ok.
We had a special relationship. We always had a special bond with each other and said that we were a special team. We called each other “Mario” and “Luigi” because just like them on SUPER MARIO BROTHERS battling those bad little koopas… we were going to battle our disease together. No matter how bad things got, she never was pessimistic or had a “bad” attitude. She always told me that “everything was going to be all right” and made the sun come out on the gloomiest days. Whenever I was having a bad time with my illness, she was the one who would help me through it because she would get on my back to help me “push” through it. She would never let me give up under no circumstances. She was such a trooper and had the best attitude on life. She never looked at a cup “half empty” and always looked at the positive side of things. She even beat the cancer at one time.
So… we had a plan that we were going to always be there for each other be there for each other. She was MARIO and I was LUIGI and like I said before, we were going to beat our diseases together. We weren’t going to let our bad koopas win. But, unfortunately, I found out last night that she past away.
I am not handling it well at all. I had a feeling that something happened to her because she always called me or texted me. A week would never go by without hearing from her, especially if I wrote to her or if she knew that I was having a problem or going through some rough spots like I have been doing. So… with all that was happening with me now, I thought it was really strange not to hear from her. I had just spoke to her about 2 weeks ago and she was just getting finished with surgery. She had a small bowel obstruction, but as far as I knew… things appeared to be going ok and she was recovering nicely. She was restarted on food and appeared to be going home. I was not expecting to hear that the “worst” has happened and that she died. However, when I didn’t hear from her, I tried calling her and leaving messages for her. She never returned them of course. I then found out that she had died.
I am not handling it well because now I feel like I have absolutely no one. Everyone that promised that they would be there for me and promised that we would “fight” our illnesses together have disappeared. My grandma was another person who was sick and promised that she would always be around “fighting” with me. However, she too passed away this past March. It appears I am the last of the bunch that promised to do the “fight.” Why am I the last one? So… I am really upset because I feel like I have no one. When I got sick with my illness, I really lost everyone. You really find out who your true friends and family are when you get sick. Therefore, they were really special people to me even more so because they stuck with me even when everyone “walked” out on me. I will forever miss them, as they were such great “friends.” They looked out for me, cheered me on and supported me, made me laugh, never let me give up, and continued to “push me.” They will forever be missed and forever be in my heart.
But… on the next breath… I guess I should tell you what has been happening with me because I am not doing well at all. I don’t even know where to begin because there is so much to say. I am getting ready again to leave for California. Gosh… it feels like I just literally got back from California and I am leaving again to go back. We are supposed to be leaving August 26th and staying for about a week. I really don’t know how we are going to afford this trip and the trips that are going to have to come afterwards, but I guess we have no choice. I am really hoping that through the kindness of others and through fundraising and donations, I will be able to have enough support to be able to continue going because my life literally depends on it. I am literally rapidly deteriorating and I don’t honestly know how much longer I can hold on even though I am “trying” as much as I can to hold on as long as possible.
To think… I should have been in Florida now receiving the more intensive ketamine coma that I was supposed to have. However, with my body deteriorating the way it is and with me having to go for the transplant and such, as well as the funds being the way that they are… we had to postpone the trip. We can only focus one thing at a time and right now the priority is going to California because we have to take care of my failing GI system and the brain tumor. Of course afterwards I will definitely need the intensive ketamine coma because it will be needed to stop the disease from spreading. After all, the disease will probably be made worse after the transplant and all the surgeries in California and will need to be “helped” more than ever because it spreads and is made worse through trauma. Surgery is one of the most traumatic things that can happen. Plus… we didn’t have the funds that could allow me to go for the coma anyway, as it is very expensive. So… hopefully by the time the coma comes around when we are done with California, I am only hoping that we will still have enough money to have the coma done in Florida because my life still depends on it. It is like my life is so dependent on so many things and it all revolves around money. Therefore, it is basically in the hands of others because unless I get help from other people, I fear that I won’t be able to receive the treatment necessary to help save my life. In the meantime though, I am hoping to continue the comas that I have been having in New York even though they are no way as helpful or the same as the one that I would be having in Florida.
We are headed back on August 26th even though the doctors really wanted me sooner. They really wanted me to come back this past week. However, we just got back from California and there is honestly no way that we could have “swinged” going back this week. I mean come on… we aren’t talking like they are just around the corner… u know? They are on the other side of the country and they are so expensive too. We still didn’t even finish up paying for our last trip. Plus… dad has to do some of his “work” as without him working, no money is being made and therefore, bills cannot be paid. Dad is still trying to catch up on all his work that he missed out when we went to California 2 weeks ago. Even going to California in 2 weeks will be a great hardship on us. But… to go right now…. it is ludicrous. It is just snowballing out of proportion with the bills. They just keep adding up and they are adding up quickly. So… we needed at least a little time to pay some bills, gather some money, do some work… even though we knew that we would severely and heavily be in debt even with waiting this amount of time too. But… at least anything would be better than leaving right away. U know?
Gosh… when we head back… our schedule is going to be so packed. We are seeing so many doctors. The main reason that we are going back is because we have to see the transplant team. Yes… it appears that I definitely need the transplant because according to that surgery that I had the last time that I was down there… I have absolutely no contractions in my stomach or small intestines. Essentially… my GI system is totally “gone,” as my stomach and small intestines are dead. Therefore, I need to have a GI transplant that encompasses getting a new stomach, small intestine, large intestine, esophagus, spleen, pancreas, etc. It is extremely dangerous, radical, and risky. It is really rare to do too. They have only really started doing them since 2008 and only 8 hospitals in the country really do them… Stanford being one of them. However, not many are really done. I was reading about Stanford and all the different transplants that they did. They were saying the statistics about how many of each different kind of transplant they do such as 1000 of this kind of transplant, 800 liver transplants, etc. However, when it comes to the transplant that I need to have, they only did about 40. However, at least it exceeds the “national average” so I should be thankful for that. Right?
I am really nervous to be honest about it. It is really risky and it runs the highest rejection rate of all transplants. I am really nervous about it because we aren’t talking about a “simple” surgery. The doctors even told me that it is definitely “no walk in the park” and that I would be hospitalized for months. They said it would be a “real battle” and I would probably be hospitalized for months. But, if all goes well and I don’t “reject” or anything… it would really be awesome. I definitely need this in order to live because I am literally dying. I only weigh in the 60s and rapidly dying. My little body is just shutting down and can’t take it any longer.
So… we are heading down to California to finally meet with the transplant team and to “finalize” and go over everything with them. I am really nervous because I am having “attachment” issues as well. I know… it sounds weird, right? But honestly… I really am. The doctors say it is kinda like having the “battered wife syndrome” because just like in the battered wife syndrome…. my organs are constantly abusing me and yet… I still love them and don’t want to leave them. I actually never thought about it like that… but I thought it was funny how the doctors compared it to that. The doctors said that just like an abused wife doesn’t want to leave her abusive husband even though she knows it would be better in the long run because she is so ‘attached’ to him and despite the fact that she is constantly abused by him for so many years… it is the same thing with me. Despite my organs constantly abusing me… I still don’t want to leave my organs even though it would be better too. I have been with them for 30 years and been through too much with them. Plus… it seems weird to be known that they are going to completely “gut” me. I am really afraid to leave them because once they are removed, there is no going back. I can never have those organs again. I know I probably wouldn’t want those organs anyway because they aren’t any good… but still… they are still my organs. You know? So… I guess I am going to have to get over that feeling too.
I also have to get over the fact that I feel so horrible that I am actually “waiting” for someone to die. I feel so bad that in a way I am hoping that someone will die so that I can live. I feel so horrible even thinking such a thing, but the doctors claim it is a normal feeling.
When I go to California, not only are we going to be seeing the transplant team, but we are also going to be seeing so many other doctors that we are going to be so very busy. I just hope that my body is going to be able to keep up with all that is going to be going on because my body is so every weak. I don’t have a lot of energy any more. I have been diagnosed with conditions that affect the energy and oxygen content in me. It appears that I can no longer get enough oxygen and energy to my body and cells that I require. So… with all that is going on and me being so sick, I just hope that my body will be able to hold up with all the “running around” to doctors. It is going to be one long week!
I have so many doctors to see and we have been setting them up. In fact, there are more doctors to see than days of the week and therefore, there are multiple doctor appointments even in one day. It is really stressful on my body when I have just one appointment. Can you imagine what it is going to be like with all these appointments?
One of the other appointments that have been set up is with the brain surgeon. I have a tumor on the pituitary gland and it must be taken care of. It is on the pituitary gland, which is the “master” gland of the body and as a result, it is causing a lot of problems for me. Not only is it causing problems in my head such as headaches, vision problems because it is located right by the optic nerve, etc. but it is causing hormonal problems as well and causing other things in my body to malfunction and go wrong because so many things are regulated by the pituitary gland, which is malfunctioning due to the tumor. Even my bones are really deteriorating, which is something I can’t afford. The doctors are really afraid that I am going to get a life-threatening fracture because my bones are so very bad. To make things worse… the medicines that I am taking for my paralyzed digestive system are actually “feeding” the tumor. We have tried in the past to stop the drugs, but it is literally impossible.
Wanna hear something? When I was talking to the assistant today and telling her my blood numbers, she literally freaked out when she heard the levels that I had. She said that it definitely had to come out. But of course it isn’t up to her. From the blood test that I previously had, the levels of the tumor are way out of control. The highest the level should ever be is 23. However, my level is 74. This tumor definitely is causing problems and needs to come out. However, no doctor in the past was willing to touch it because of where it is located (it is so risky because it is right on the pituitary gland) and because of how complicated and risky my medical health is.
Yet, the doctors at Stanford are not like any other hospital. They are hopefully going to follow what they are saying and going to “touch” me. They are used to these very “high risk” cases and therefore, they are willing to operate on me. Thank goodness because it really is causing a lot of problems. Not only are the bloods coming back, but I am also suffering from the actual effects of the tumor because I am having lots of vision difficulties and I feel a lot of “pressure” in my head and eye. I have also been having black outs and such, but we don’t know how much is attributed to the tumors, autonomic dysfunction, or both.
I was really afraid that I wouldn’t be able to be seen at Stanford for the tumor because when I was trying to make the appointment to see the neurosurgeon, the original neurosurgeon that they wanted me to see was not taking on new patients due to a family emergency. However, they found me another neurosurgeon who is supposed to be “top-notch.” This doctor better be “top” because after all… he is operating in my brain and it is very dangerous. I mean we are talking BRAIN surgery. We can’t afford for ANYTHING to go wrong. They aren’t sure if they will be opening my skull though and operating that way or if perhaps they can do cyber knife. So… we will see when we go down there. He is one of the most famous doctors though that operate on the pituitary gland and take off tumors from there. So that is good.
I am also going to see another doctor who is involved in the gastric pacemaker because the doctor said that if I really want to… I might be able to do that still. Of course she said that I would have to understand that they don’t really “think” that it was going to work, but they will be only be doing it merely as a reason as being something that is “out there” and a possibility. They don’t think it is going to work because they haven’t had really good results with it. Plus, even if it did work… it would only be helpful on the stomach and wouldn’t have any bearing on the rest of my body like on my intestines and such. So… my intestines would still be “dead” and such. So… is it worth it? Also… going for the surgery can easily spread my underlying neurological disease, which is already spreading like a wildflower and on the rampage. We can’t afford for it to spread and therefore, we don’t know if it is also worth trying as well because is it worth risking it for something that we don’t know is going to work and even if it does will only work on one particular organ and will still leave other organs “dead?” Also… the pacemaker is a device and since I am so thin, I have no padding and cushioning. As a result, it can easily spread my disease too because of the trauma it causes from being a device in me. So… what would you do? My dad and I really have to decide because we really don’t know what to do. We know deep down that it probably isn’t worth it at all because it hasn’t been proven to work or really be beneficial. Plus… it still would leave my other organs “dead.” But, when I think that it could prevent the transplant, it seems such like a wonderful idea because I know how risky and dangerous the transplant is. So… we will see what happens. I know that the best treatment probably is having the transplant, but if I knew that it would be a success and I wouldn’t have any complications, it would be such an easy choice.
I also am meeting with my other doctors as well. I have to meet with the neurologist/autonomic dysfunction doctor and GI doctor. There are also tests that I am going to have to undergo as well. So… I will be very busy.
Speaking of… I have to undergo some heart tests because of a medication that the GI doctor wants to place me on. Unfortunately, the medicine causes prolonged QTs and since I already suffer from prolonged QTs, they don’t know if I can take it. It is basically the only drug left that I can take to “help,” so it would be a shame if I can’t take it.
I am not allowed to take any medication that would affect my heart in QT way. If I was… the docs would have raised my methadone because they would have loved to do it with all the pain and suffering that I have been in. However, since methadone has been known to cause prolonged QTs as well, my heart doc has already said that I can raise any other med, but under no circumstances can I raise the methadone. So… it would be the same under the new medication if indeed my heart does show the prolonged QTs with the new drug. I have went for one test to see if I could use this drug, but the doc didn’t “type” my name into the computer and left the sex on the paper as “male!” As a result, even though it really wouldn’t make a difference in the long run, the doctors at Stanford won’t accept it. Therefore, I am going to have to go back to the doctor and have this test again so that my name can be typed into the computer (and so it can be printed clearly on the printout with the results) and so it can say “female” instead. Gosh… what a pain. It isn’t like I have all the time in the world to do this either. But, I have no choice. I have to go back to the cardiologist next week to have this done. The docs also made an appointment for me at the hospital in Stanford in case I am not able to get it done here, but I am hoping to get it done here because the sooner, the better.
I also started new injections today. Like I said before, my bones are severely deteriorating. The doctors are really afraid that I am going to get a life-threatening fracture, and then I will definitely have much more problems on my hand than we bargained for. In fact… whenever I do go to the bone doctor(a.k.a. endocrinologist), he is always asking “Did you break any bones lately.” I have been undergoing bone infusions, but they haven’t really been affective. Despite the first time that they actually “built” bone, I have been losing bone since. The doctors though say that it could be a lot worse without those infusions. However, since my bones are so very bad, they had to do other things to help my bones because they are literally “paper thin.”
I have tried these injections in the past, but I was allergic to them. However, with all that has been occurring with me, the doctor really thought that we had no other choice but to try it again. As a result, the doctor wanted me to have the first dose in the hospital in case something happened. At least I would be in a “controlled” environment and I would be able to receive the necessary “help” I would need if I did have a reaction. As a result, my dad and I went to Columbia Presbyterian today to have the injections started. It just stunk that we had to go to that hospital to have it done because it isn’t like it is right around the corner.
Columbia Presbyterian is the one hospital that I hate going to the most. I hate going to all hospitals in Manhattan because they of the commute and traffic, but more so because of the parking. It isn’t like the parking is right outside the door like the hospitals on Long Island. Instead, they have the parking garages like 2-3 blocks from the hospital and as a result, you have to “walk” to the hospital. Going to Columbia Presbyterian is the worst because not only does it take the longest to get to that hospital, but the garage also happens to be outside. So… if it rains, there is kind of no place to take cover. Plus, where the hospital is located, it is really hilly. As a result, when we are walking to the hospital, it is kind of difficult because we are walking “uphill.” Being on crutches and everything… even though I am a “pro”, it still isn’t easy walking up hills and with me not having a lot of energy and oxygen… you can imagine how difficult it is. Of course leaving isn’t so bad though because it is all downhill. It especially stinks when it rains too because you have to do all this walking in the rain. It is horrible for me because for someone that is so hypersensitive and in so much pain, any type of weather really affects me unless it is the perfect weather outside. Therefore, the rain, sun, wind, etc. all affect me and cause me even more pain as I walk to and from the hospital, but I really have no other choice.
The endocrinologist is one of my favorite doctors. He always sticks up for me when my dad “picks” on me because he is kidding around with me. My endocrinologist and I even had a talk saying that “medically” I shouldn’t be existing. He said that he doesn’t know what I am doing… but I really shouldn’t be alive. Someone that weighs as little as I do… really shouldn’t be alive. He said that all things considered… I am really despising the odds. I told him that I am going to be his longest patient ever to live.
Anyway… the doctor of course was there when I was giving myself the injection. I already give myself injections and of course they all have to go into the same place, which is my stomach because that is the only place that I have some “fat.” My poor little stomach… how much can it take because it constantly is having injections daily, and it isn’t like it is one injection either. You know? Well… due to how thin I am, the doctor wanted me to be really careful with this needle even though I have given myself injections already with other medicines. He was afraid that due to how thin I am that I would puncture my pericardium or something, so he showed me how I should be positioned. When he said that I could “puncture my pericardium,” I got really afraid because I never thought that was possible. I was so afraid because I punctured my lung in the past and had to have so many chest tubes inserted and such because they couldn’t get it to stand up… I didn’t want a repeat performance. It was one of the worst experiences of my life!
When I did take the injection though, I did have a reaction. The doctor made me stay in the hospital all morning and right by the nurses too because I had to be monitored. However, I did end up having a reaction. I ended up breaking into a rash, getting light-headed, extremely dizzy, and have a huge headache. I was really nauseous too. All I could do was put my head down and such. I was also really itchy. I thought it was never going to end. However, despite all these feelings, the doc still wants me to do it again because as long as I don’t go into anaphylactic shock or something… he wants me to take the injections because that is how bad my bones are and how badly they need it. However, he said that I should take them as long as I can take it. He said that if it really gets unbearable… than let him know. I was so very sick during this time and to think that I am going to get this way all the time I take this injection… I don’t know how I am going to handle it. My dad already said to me that it was the longest morning of his life with me. I told him that tomorrow I am not going to take the injection until he comes home because just in case we have to go to the hospital or something. You never know, right? After all, I felt so sick this time… who knows what will happen, especially since it is only the second time I am taking it?
My mom’s birthday was the other day. I really wanted to make her birthday really special for her because she does so much for me and I can’t thank her enough for all that she does for me. She has given up so much for me too and it is definitely not fair to her for all that I have put her through. She definitely deserves a much better life than the one that she has. I have been such a “burden” to my entire family. Anyway, with the money being so “tight” as it is, I really couldn’t afford much. Therefore, I just bought her a nice card, a beautiful cake, and a chocolate champagne bottle. I really wanted to make it nice for her because it can very well be the last birthday I share with her, especially if I don’t get enough funds to continue treatment or something happens during the transplant or something. With how I am deteriorating, the doctors don’t think I will make it another year, so I really wanted to make it as special as I can for my mom. I was told though that the cake was simply amazing. I knew that she loved pistachio ice-cream and even though no one else in my family loved it, I still made sure she had all that she loved because 1/3 cake was pistachio/vanilla, 1/3 cake was vanilla/chocolate, and 1/3 cake was coffee/vanilla. I even had freshly chocolate dipped fruit put on top because I know how much she loves it. I really hope that she loved all that I did because I only wish I could have done more for her. I know how much she would have loved to go “out,” whether it was for dinner or for an activity, but since I can’t do either… I tried to make up for it.
Well… that appears all that is going on. I am really not feeling well, so I better be going. I am in desperate needs of support and funds and have been praying that I raise some money because my life depends on it. The bills are really growing and it is getting more difficult to pay for the treatment that I am having because of the cost. I was fortunate that people have donated money and I am extremely thankful for it. I am also extremely thankful to all the people who tried to spread the word that I need HELP!
However, I really wish that I could get on TV or in a magazine or something. I can’t understand how other people manage to do it. I see all these people with their stories and yet… no matter how hard I try, I can’t get my story across. I wonder how they do it. I desperately need help and unless I get some funds, I fear that I won’t be able to get the treatment to help me.
I can’t afford this alone and unless I raise some funds, I fear I won’t survive. I am too young to die and I have so much that I still want to do! My family and me are watching my life slip away. Someone please help me whether it is by donating, saying a prayer, or even by spreading my website and saying how I need HELP.