Just wanted to update on what has been happening. As of right now, it appears that we are heading back to JOHN HOPKINS in Baltimore, Maryland on August 18th. Even though I am really deteriorating and such, I have really have had some issues occurring that is preventing me from being operated on and delaying everything.
I am really suffering and getting worse, but unfortunately, we will have to wait about another 2 weeks until we leave for HOPKINS. It is taking longer than we thought to schedule everything because it takes so many teams to coincide with each other in order for me to be hospitalized. It is not like I can just be put into the hospital on any floor and it isn’t like I am having only one operation. Instead, I need to be put onto an ICU floor, which is usually filled because it is a level 1 hospital, and I will be having multiple operations. In addition, when I am being operated, I cannot just have the operating surgeon in the room, but I need a whole team of specialists in the room in order to deal with my complicated nature. I even can’t just have one anesthesiologist because of how complex my condition is. Instead, I usually have 3-4 anesthesiologists because they are afraid of something happening and this way they can all work together to make sure that I am in the best of hands and I will be able to survive the operation. So… the operating room is always crowded and a huge spectacle. Then, we also have to worry about having the ketamine team available too because I will not only need ketamine during the operation, but I will need to be put into a ketamine coma and have a ketamine infusion throughout the entire time I am at HOPKINS because of the extreme pain I will be in and because of all the trauma that will be occurring to my body. My disease spreads like a wildflower and especially when there are traumatic experiences.
In addition, besides needing all the doctors and all the different teams to coincide with each other and to be able to schedule everything, my doctors don’t want just ‘any’ doctors on my case. Instead, they want the head honchos or the ‘senior’ doctors in each specialty because they are the most knowledgeable and probably the most capable if anything should arise especially when they are dealing with a complicated case like me. Therefore, the ‘seniors’ in the motility department and the GI department will not be around until the 19th and since my doctors want them to see me, they want me to come then. Of course the would like for me to come now and then stay until then and proceed with the surgeries and stay afterwards, but of course I cannot do that because of the finances and timing. We don’t even know how we are going to pay for the trip as it is, there is no way we can arrange to make more time beforehand. So we are planning to hold out until the 19th, so we will arrive when the ‘seniors’ are there and do everything then.
Since we don’t have the time (dad has to work and can’t be away from the business so long) or funds because we will be already staying there for at least 2 weeks, we really can’t afford to go down there now and then stay there until then and then after that date too. So something had to give and that is why we are going to first go down on the 19th and stay throughout Labor Day. Even though I am really suffering and deteriorating, we are hoping that I will make it because we really can’t afford to go down now. We are hoping that during the next two weeks we will also be able to come up with some funds and money to pay for the trip because as of right now, we really don’t have any to pay for the trip and the medical treatment.
One bad thing about staying through Labor Day though is that the rate of the hotel of course is going to be higher. I really can’t complain or say anything though because the hotel is still giving us a break even though it is going to be much higher than we usually pay. They have always been so kind to us in the past with giving us huge discounts, giving us a room that overlooks the harbor, giving us concierge access for free because they know how much I need food and such, giving us free internet access, giving us free transportation to and from the hospital, giving us a room when they are supposedly sold out, going to the restaurant and getting me something that they normally charge for because I want to bring it back to the room with me, etc. They are so accommodating and such that I know that I really can’t complain this time that they are raising our cost because it really isn’t there fault.
The reason that they are raising the cost is because it is the time that the Grand Prix event will be in Maryland and our hotel is basically right in the center of the track. They close everything around it and we will have special access passes to get in and out of the hotel. I of course won’t be there because I will be in the hospital, but I can just imagine how cool it will be to see the cars racing right in front of your hotel or just look out your room window and see the race. I already told my dad that he better take pictures.
We are just going through money like water. My treatments are just so expensive and the more that we are trying to hold our head up above water… the faster we are drowning. But I know how hard life is getting, but I am still following my saying… “I am still swimming,” but it is honestly getting harder and harder. I really don’t know how much longer I can keep going. I sometimes wonder how much more my body can take. I am so tired of suffering. I am tired of the physical and emotional pain. Sometimes I hope that when I take my medication that I go to sleep forever so I can escape this disease. The doctors have said that if “Hell was a clinical condition, it would be known as my disease.” But I know how much I mean to my family and how much I still haven’t accomplished in the world and haven’t experienced, so I continue to push on. I just don’t know how much more I can take to be honest with you. It isn’t fair to me though and it isn’t fair what I am doing to my family. This is no way anyone should have to live.
Dad keeps telling me to “hang in there” because we are leaving for HOPKINS shortly. We are hoping that going to HOPKINS will help, but who knows if it will. I will be undergoing multiple operations and I am extremely nervous. I never have been so scared before. I am really not sure if I can even make it through all the operations. In fact, I was talking to the doctor the other day and even the doctor said that the surgeons are extremely scared about me dying on the table.
The surgeons are so scared of me dying on the table that they said that the first operation is probably going to be the one to put the tubes in me to try to feed me. They are going to try to put the tubes in me and drag then through my entire GI system (through the stomach and intestines) and try to find that small portion at the end in the small intestine that might be viable still to feed me. They don’t know if they will be able to accomplish this because they have tried this in the past, but they are trying it again. Also, just because they put the tubes in me doesn’t mean that my body is going to accept the food. It can easily stir up the autonomic dysfunction and that is a BIG problem too. We are really between a rock and a hard plate.
The doctors want to try to feed me first because I have absolutely no weight on me whatsoever. I have an extremely low BMI that is basically unheard of (10.8). The doctors have even said that I have absolutely like no reserves to help me recover from any surgery or infection or anything else. Therefore, they are hoping that this will help me in all the other surgeries and if I do get a complication or an infection because it will give me some ‘reserves’. You know?
After this operation, the doctors will proceed with all the other operations hopefully, which will include getting the other tubes that will ‘vent’ me because I get such gas buildup and I can’t expel it because my entire GI tract is paralyzed. I will also have the blockage/obstruction removed and hopefully that won’t end up in an ileostomy.
In addition, the doctors are going to try to detox my body because of all the opioids that I have been on for so long. I literally take over 50 pills daily and they are hoping to get me off the opioids because they do harm and are not healthy to be on. I am not just on one either, but I take methadone, morphine, dilaudid, nucynta, ketamine etc. on top of all my other medications. In fact, the doctors even just even raised my dilaudid because of all the pain that I am in. I am literally crawling the walls because of the pain. I really hope that we can get off the opioids because I take so many medications and have been having so much trouble swallowing. I literally eat pills for meals and snacks and it would be so nice to be able to cut down the amount.
So there seems to be a lot planned and such. We will definitely have our hands full. I am just hoping that I will be able to make it through it. I am extremely scared because my body is not in the best condition and I am really weak. I am so scared because not only am I scared of dying there, but I am scared that something is going to happen to me there and my dad is going to be there all alone. No one is going to be there to support my dad if something happens, and that really freaks me out. I know he would never be able to handle it if something was to happen to me.
In the meantime, we are hoping to raise money so that we can afford to go to Maryland and also pay for the treatment that I need in the hospital because it is going to be incredibly expensive and it will definitely add up quickly. Even though the hospital is covered, the copayments are extremely expensive. The hospitalization alone is going to cost me $150 a day. Then whenever I need to have a scan such as a CT, MRI or an X-ray, it will be another $100 for each. It will also cost me $100 for each day I go for a blood test and each time I go for a surgery/procedure. I really don’t know how we are going to afford it. We definitely don’t have the money right now so in a way we are really lucky that we aren’t going right now. As it is when my dad is with me in Maryland he won’t be working and there will be no money coming in.
So I don’t know how this is all going to be afforded. I just hope that my dad doesn’t lose the business or anything because if something should happen because of me, I don’t know how I would ever forgive myself. I know how desperately we depend on the business to pay our bills and for our income, but without my dad working, I don’t know how on earth it is going to survive because no one is going to want to wait for his return to have him come to do the work. That is why my dad is working harder than ever right now, which is also scaring me because he is no youngster and I am so worried about something happening to him like him having a heart attack or something. He works from 3 AM to 7 PM almost 7 days a week. He is so tired that as soon as he comes home, he passes out. He is lucky that I am in sooo much pain and can’t sleep because not only does his alarm wake him to get up in the morning, but it also takes me yelling at him to get up for work in order for him to actually get up. He is just physically and emotionally exhausted and I honestly don’t know how much longer he can keep this pace up. I was looking at pictures of him from February and just in this short amount of time, I have seen a vast difference in him. Boy has he aged.
Also in the meantime, I have not been doing well at all. I have been having an extremely difficult time walking and even standing or sitting. My left leg is giving me tremendous difficulty, as I can’t even extend my knee anymore without huge amount of pain. I even need help getting up and down because of the extreme pain. There is definitely something going on with the leg because I never had pain like this in it. I am going to the orthopedist tomorrow to see what the problem is, so hopefully we will have an answer.
In addition, I also broke two of my toes because soup cans fell on them. This is definitely not good because my disease spreads through trauma and this is definitely one way my disease is going to spread. I can’t even have anything done for them because I can’t immobilize them or anything since immobilization is the worst thing that can be done for my illness. Whenever you immobilize a limb or something, you spread the illness. So… I just have to deal with the pain and wait for it to heal. The problem is that I don’t heal like a normal person. It takes me forever. Thank goodness it happened though to my left leg because I can’t walk on that leg anyway. At least it didn’t happen on the leg I depend on because if it did, I don’t know how I would manage to walk.
The osteonecrosis is also worsening. I have more bones protruding than ever. I have an appointment with the surgeon on Thursday.
Speaking of bones, I started the new set of injections that the bone doctor put me on. I went to the hospital this past Friday to start them, but they are giving me reactions. I am hoping that the reactions will subside and not worsen because I really need them. Ideally I really need the infusions, but since I have the osteonecrosis, the bone doctor refuses to give me them anymore even though the surgeon for the osteonecrosis said it was “ok” to give it to me because my bones desperately need it. My bones are really deteriorating fast and they are paper-thin. I am losing so much bone so fast and they have been giving me these infusions to help build bone. Besides the very first time that I took the infusion, I have still been losing bone, but the doctors have claimed that without the potent infusions (that have also made me sick when I took them), I would have lost even more. I have had really good results though with the last infusion because even though I did lose bone in my limbs, I did gain 11% back in my spine and hip. They are so scared that I am going to get a life threatening fracture, which is a real possibility, because of how frail I am. In fact, whenever I see the bone doctor, the first thing he always says is, “Have you broken any bones lately?”
However, despite the good reaction of the last infusion and despite how potent and how much I need the infusions, the bone doctor refuses to give me the infusions because of the osteonecrosis. Therefore, I have no other choice but to add these daily injections to give myself in addition to all the other medications that I already take and the other injections too. So I went to the hospital on Friday because I had taken them before and had a really bad reaction and the doctor wanted to keep me under “watch” to make sure that nothing serious happened this time.
When I did take the injection at the hospital, I did have a reaction. It was only a local reaction, but it was still a reaction. I itched like crazy and my abdomen broke out with a rash and was swollen. It also triggered off my autonomic dysfunction and made me very flush. The doctor is hoping that with time that the reaction will subside and not worsen because I really need these injections. This is really our only option and without it, I am really up the creek. Even with the injections, they are nowhere as powerful as the infusions, but they are much better than getting nothing and are the next best thing. So we are just keeping our fingers crossed that nothing worse happens.
My dad loves when my bone doctor and I speak because he says that it is like a “comedy act.” My dad says that we just keep nodding at each other because neither one of us has the right answer or knows what to say.
I have really been suffering lately with being very thirsty and very weak. My dad says that he thinks that I am severely dehydrated despite all the drinking that I am trying to do. I try to drink as much as I can, but the more that I drink… the worse that I feel. I have noticed also that the thirstier that I am, the worse that my stomach hurts when I do end up drinking. Plus, nothing quenches my thirst. I never can win!
I am also dehydrating probably because of all the mucous that is coming out of me from below. I don’t know why but there is just so much mucous. In addition, it smells like rotten eggs. When we asked the doctor, the doctor says that it is because I am ‘rotting’ inside because my GI tract is so paralyzed and not moving.
I am having such difficult eating and drinking anything. Even getting the ice pops with my heart medications in them are getting impossible to get down. For me to have trouble getting those down, it has to be bad. I am not only having difficulty swallowing, but they are making me incredibly nauseous. I don’t know what I am going to do because I desperately need them because not only are they ‘hydrating’ me to a point, but they have my meds too. I am literally like running out of options to eat because I am so limited to what I can eat. I basically can only eat ice cream and egg whites and even that is troubling.
I have been trying though to have other things because if I do end up having the tubes at HOPKINS and coming home with them, I won’t ever be able to eat again. Therefore, I don’t want to feel like I missed out on anything. So I am trying to at least taste or at least ‘suck’ on stuff that I might miss later on and this way I can say ‘at least I had it.’ I have had things like McDonald French fries and Pizza… all things that people love to have. All I want to be is ‘normal!’
Speaking of being normal… you know what my dream is? I would love to be able to walk around with a cup in hand. I see how everyone walks around with a coffee or soda or ice-tea in hand to drink. I can’t do that. However, I only dream that one day I will be ‘normal’ and be able to walk around with one too and drink it like everyone else.
I am also glad that HOPKINS got postponed because my mom’s 60th birthday is this week. I really wanted to be here for it because it meant a lot to me. She has given up so much for me and I really wanted to be here and do something special for her day. So I am glad that I will be around to celebrate it. I bought her a plant called a Bromeliad. It is really pretty and it is supposed to come back every year. This way if something should happen to me, she will always have something to remember me by,
I have been doing a lot of thinking lately. I really want to make a mark on society and I don’t know if I will ever get that chance. I know that I always wanted to be a doctor and help others, but this disease really robbed me of my life and all my dreams. I really wanted to make a difference in the world and I wanted people in the world to know who I am.
Therefore, I am making a box of letters so that my family and my future family will know all about me and know how much they mean to me and how much I appreciate all of them. I wrote letters to my parents and brother telling them how much I love them and all that they mean to me. I also wrote letters to my brother’s future wife and kids so that they will know me as well and know what type of person I was so that they will know who there sister-in-law and aunt was.
In addition, I was thinking about having a Taslich ceremony. With Rosh Hashanah coming up, which is the Jewish New Year, I really want to start fresh and new. Therefore, was thinking about having this ceremony as a way of doing so and hopefully maybe it will make me better too. Taslich is a ritual that invites a person to toss bits of bread into a moving body of water as a symbolic throwing-off of sin and personal shortcomings. The ritual is one of dozens that mark the celebration of the Jewish New Year, which flows into Yom Kippur (Day of Atonement) and then right into Sukkot, a weeklong holiday when many Jews eat all their meals in little huts they erect outside their houses. So I was hoping that by doing this Teshuvah, which literally means “return” and is the word used to describe the concept of repentance in Judaism, I can erase my improper actions and can be further helped because only by atoning for our sins can we restore balance to our relationship with God and with our fellow human beings. If people say prayers are very powerful and helpful, then I am hoping that this is one more way that can possibly help me as well. Rabbi Kook once said the gist of teshuvah is “the uplifting of the will” (15:2), the strengthening and healing of the sick soul whose will power is weakened. He also said “And a healthy soul in a healthy body must attain the great happiness of teshuvah” (8:1).
In addition, I was also thinking about going to pray at the lebavitch rebbes grave. He was a rabbi that lived in the 1900s and he was said to be as closely connected to god as Moses was. People travel to his grave from all over the world and go there and pray and cry their hearts out to him about anything. People report miraculous recoveries after visiting his grave. When he was alive and would give blessings when they came to see him, they would again say it was miraculous what resulted.
Well…nothing else is really happening. I am trying to hang in there, but it is extremely hard. Like I said before, they just raised my dilaudid to help with the pain, but I am suffering so much. My miracle drug is the ketamine, but unfortunately it is so short-lived. Dad has to pick up some more ketamine tomorrow, and it is so expensive. It literally costs us like $200 every other week, and that is on top of everything else.
I have really been trying to keep my mind busy in hopes not to dwell on the pain. I have been doing some reading. I have been reading JK Rowling’s new book called “The Cuckoo’s Calling.” I loved the “Harry Potter” series so I am hoping I will like this too. I know why she probably wrote this book under another name. She wrote another book that wasn’t such a great book. So I figured that she wrote this new one under a different name because this way if it was also a flop like the other one… no one would know. But if it were a success like it is… then she would come out of the closet and be known. It was a way of covering her butt.
Well… I am going to rest. I am in tremendous pain and I can’t really write. I will let you know more when I know more. Thanks again for all your continued support.