So much is happening right now that I figured that I would write and bring you up-to-date as to what is occurring. There is so much occurring that my head is actually spinning. Thank goodness my head is connected to my shoulders because it would have spun off by now from what has been happening. I am apologizing in advance if this little blog is incoherent, but I am on a lot of meds and therefore I don’t know if it is all going to be fully understandable or even going to contain all that is needed to say. So
Unfortunately I am not doing well at all. I had another surgery today because it is another Friday and therefore, I went for my usual “housekeeping!” I need to go every Friday for surgery because they have to try to suction/vacuum out as much of the intestines as possible because my colon is basically ‘dead’. Nothing is moving at all and therefore, things are literally fermenting and rotting inside of me. Doctors are really worried that I am going to perforate or rupture my colon or that I am even going end up going into Sepsis because of all the stuff that is literally just staying and rotting inside of me. There is so much viscous liquid inside of me that I can’t expel that the doctor literally has to perform surgery every Friday to try to vacuum/suction as much out as he could.
I have really been deteriorating lately. My abdomen is extremely bloated, I am leaking a lot of mucous more than ever, and I am in tremendous amount of pain. I really need help and help fast. Each night we basically have to change my sheets twice I either vomit up blood, which has been happening frequently lately, or I have been producing a lot of mucous (not to sound disgusting). I am also having a really hard time breathing, as the aspirating is getting worse. I am literally drowning in my fluids. I am trying to hold on, but I am telling you that it is really getting harder and harder. I go through more clothing at night than I do throughout the day.
The doctors can also see that I am getting so much worse. Even within a week’s time they can see a difference. There is so much more viscous liquid that had to be drained than last time and the doctors have seen such a difference within me from the last surgery that I had, which of course was last Friday. My colon is extremely dilated, which is not a good sign. In addition, I am also vomiting blood now, so not only did they have to vacuum me out and suction me out when I had the surgery on my intestines today, but they had to also work on my esophagus today to further determine what the bleeding is and such.
So today was my typical Friday. It was “Housekeeping Friday” because I went for my usual surgery to clean me out. However, not only did I get “cleaned” and had the extra exploratory surgery because of the vomiting blood and such, but we also discussed a lot of things. We always wondered why they couldn’t do all the tests and surgeries that I needed to have done right here in the New York area. After all… this is New York and it is known as having the best of everything including hospitals. Well, we found out that the reason that I can’t have the tests and surgeries done here is because what I need to have done can only take place in a top research hospital like Cedar-Sinai.
The problem with New York is that it is too expensive. It is amazing how money controls the whole entire world. Not only is money preventing me from going to get the much needed lifesaving treatment that I desperately require in order to save my life, but it is also why I can’t have the surgeries and tests performed here. The doctor explained to me that since the cost of New York to live is so expensive in general, most surgeons and doctors don’t want to invest in living here especially when these tests and surgeries are also very expensive to have done. So since cost is so high to live here, doctors rather go to places like Cedar Sinai Hospital and work from there.
We are about 2 days away from leaving to go to California, but I am not counting on going until we are up in the air. We are still having a hard time getting the funds together, so if you have any way of helping us out… whether it is by donating and/or spreading the word of my website, I would really appreciate it. I desperately need to go too. In fact, the doctors know how important it is that I be there because they are actually making “exceptions” to me coming because they really don’t have room in their schedules. But hopefully all will work out and we will be on the plane Monday morning to California.
Besides going for the surgery today, I have been on the phone all day with the doctors from California. Even though they are across the country and not physically seeing me, they have been getting copies of every surgery and procedure that I have been having. They are not pleased with what is occurring with me and they know how necessary and imperative it is that I get to them immediately. That is why they didn’t want me to wait to have that last test done, which they wouldn’t be able to arrange for another month. They made special exceptions for me to fit in with the surgeons and everything so that I can come next week and not wait because things are so bad. They don’t want me waiting at all because to be quite frank… we don’t have time to wait. Time is not on our side.
The doctors know that I will need surgery, but they are hoping to be able to do this all without having to give me a “bag”. It would really be great if they can do this because I really don’t want to have an ostomy bag and they know it. So they are going to be doing all these tests, procedures, etc. when I go down next week to finalize exactly what has to be done and this way we get all the t’s crossed and I’s dotted. We hope that after this visit to California that we will be able to have the surgery on the next visit.
The doctors have me going for so many tests and procedures when I go to California. I know it certainly won’t be a “fun” trip by any means. I probably will be suffering beyond belief. But I really don’t have any choice. At first I was a bit hesitant in going as well because there were some tests and procedures that I had already had and they are just repeating them. Some of these tests were considered a “waste” when I had them done because they couldn’t get accurate results I couldn’t do what the prep was or do exactly what the test required.
So I questioned the doctors if it was really necessary to have those procedures and tests again because I didn’t want to spend money where I didn’t have to and I also didn’t want to put my body through any stress that it didn’t have to do so either. The doctors at Cedars-Sinai said that they want me to go for all these tests and procedures because they want to see firsthand what is going on especially since taking out the colon and such, which is no small surgery. In addition, they told me that they know how very sick their patients are and they adjust the tests to our needs. Therefore, whereas the other places had difficulties with the tests because I wasn’t the typical patient, they know how to make the appropriate adjustments and how to interpret the results accordingly.
I know that it is going to be a crazy week in California. There is going to be so many surgeries and procedures and tests. At least the actual doctor is doing everything instead of having a nurse or a tech do them. I never went to a hospital where a doctor performed everything for the patient. The doctor said that I am so “specialized’ and complicated that he wants to do everything himself.
In addition, I will be meeting the surgeon that will be doing the surgery. It turns out that the surgeon is one of the top surgeons in the nation and I have even seen him plenty of times on TV without realizing that he would eventually be my doctor too. The surgeon that I am seeing is named Dr. Zuri Murrell and he is one of seven doctors at Cedar-Sinai hospital and has been practicing medicine for over 14 years. He is one amazing doctor that I am so glad that I am going to have him as my surgeon. I just hope it all works out when I meet him.
Dr. Murrell is the Director of the Colorectal Cancer Center at Cedars-Sinai in Los Angeles. He has so much written about him. He is nationally recognized as a top colorectal surgeon and trains colleagues and students at Cedars-Sinai in Los Angeles. He is not only supposed to be an outstanding surgeon, but he is supposed to have excellent bedside manners as well. You don’t find doctors like that around much anymore.
So… it is going to be a long week and hopefully everything will work out. So this weekend will be busy getting everything ready. I am thinking of renting out “Orange is the New Black” because I watched season 1 and it will give me something to do on the plane and such to watch season 2. I am also trying to think of some good books. Any suggestions? I am already reading “Cuckoo’s Calling” by JK Rowling and the sequel is coming out on June 19th, so I will have that as well. Know any good movies to rent? I really would love to see “Fault In Our Star” but it is in the theaters and unfortunately I can’t go to the movies. I read the book and it was simply amazing. However, I will have to wait until it comes out on DVD before I can see it because that is just another thing that this illness robbed from me. I can’t go to the theater because I can’t sit in the seats due to the way they are set up and the length of time. I won’t be able to sit for a full movie at one time. Plus, I won’t be able to be around so many people for such a long period of time both because I have absolutely no immune system and I can’t afford to catch anything. After all, everything is magnified for me and therefore, a simple cold is like having the flu to me.
There is so much packing to do. I have this special pillow now that I have been using to help with the aspirating. It is really comfortable. I am thinking about bringing it along with me on the plane especially since they don’t give you pillows anymore on them. I just hate carrying things because I knowhow difficult it is. I can’t carry things because I am in the wheelchair, and my dad has enough to carry already. So I don’t know honestly how well that pillow is going to work. Maybe I will be able to stuff it in the cosmetic bag with all the medicine. But to be honest… there is so much medicine that I doubt it.
Well… I am really not feeling well so I am going to cut this short. I will write more when I know more. Thanks again for all your support.