Ok let me start by saying I am sorry that I have not posted earlier. I didn't mean to get everyone all worried.
In my best Dr. Frankenstein voice. I am alive!
Like sands through the hourglass, so are the days of our lives...
First off. Wow does time fly. This past year has gone in a flash. I cannot believe that I am almost up to my one year transplant anniversary. Woot! It really seems like I was just in the hospital just starting this whole process.
Ok the good news/bad news portion of the show. Ok, the last time I posted they had tried to change my immunosuppresant with no luck. So i went back on the stuff I was on the whole time. I continued to to do the photopherisis treatment. I started getting these very large bills in the mail from my insurance company. So I called the nurses I deal with for my treatment (they are now very close friends of mine) and asked them if this is what the treatment really costs. They seemed surprised and so did my doctor at what the hospital was charging for the treatment. Essentially $95,000 per month. For those who don't know when you have health insurance the insurance company deems that your life is only worth $1,000,000. Once you use that up your are on your own. That is for your lifetime. I don't know how it changes if you change insurance companies, but when you do change they have to be informed of prior illnesses. So you are good for about one major illness in your lifetime. Choose wisely.
So anyone that can do simple math can tell that I was going to be out of insurance money soon, seeing that all of the prior hospitalizations and treatments I had spent in the area of $350,000. So I viewed it that in a a few short months it was going to be a sink or swim situation. Kind of a grim outlook. I made a few phone calls to my counselor that deals with my insurance and my general wellbeing as far as how things are going. She said she would look into it.
Meanwhile in Gotham city....... My doctor and nurses had a sit down to figure out how to help me with the current situation. They had decided that they would take me off of the Photopherisis all together and put me on a different treatment all together. This in a combined effort to get me off the roids and save money. Ok, so my doctor comes in and says he wants to put me on a drug called Campath. He tells me "We don't have a lot of experience with this drug but the few people that are on it seem to be doing well." So I am like thanks for the confidence builder doc. I told him I would have to talk it over with my wife and family. At this point I am really for trying anything because the photo did not seem to be working all that well, and I needed something that was going to work. After all I looked at the drug info on the manufacturers website, and whats the worst that could happen to me? According to them "death".
I have kicked deaths a$$ so far whats another round in the ring? Well I call my brother to see if he could talk to his friend Fred. Fred is his oncologist friend that works at the same hospital as my brother. Fred said go for it, and that he feels that the cam path is a much better treatment than the photopherisis is.
I give my doc the green light to go ahead and start the treatment. I did make one mistake however and told him that I got a second opinion on the Campath treatment. Wow that was the wrong thing to do. He nearly flipped his lid and got all upset that I would even talk to another doctor let alone one that has never done transplants. I think it hurt his pride more than anything. I am the patient, if I want a second opinion I will get one. I just won't tell my doc anymore.
While this is going on I find out from my counselor that the previous person had made a mistake in the billing and never turned in the authorization at the turn of the year, stating that I was pre-approved for all of the treatments and that I had a package deal with the entire transplant and all of the treatments that followed. She also informed me that my insurance company made an exception for me and I have a $2,000,000 max instead of 1mil. Woohoo!
Ok so now that the billing is taken care of, I started the new treatment. Let me tell you guys something. It was like night and day different from the other treatment. The gave me a small 3mg dose at first. These are injections I get in the arm. the small dose is to see how I react to the drug. I guess they do this because the small dose will give you some of the side effects of the drug right away and get it out of your system so you can go on the treatment sized dose and not have any problems. So that afternoon I was met with nausea, a 101 fever and chills like you could not imagine. 3 hours later the fever broke and I was all good. I got the treatment dose the next day of 10mg. Now this drug I only have to get once every 3 or 4 weeks or when they feel I need it. Guys I feel so much better on this stuff rather than the doing the other stuff. I feel better physically and mentally. I have more energy, but still don't have the stamina that I need, but that will come in time. Everyone says that they can see the change it has made in me. The itching has stopped, for the most part until the campath starts to wear off. Most of the red rashy stuff is gone. This drug is a means to the end, or so we hope. I am getting off the roids finally. It will still be a while but I am on 10mg every other day. I am still on all of the meds and maybe one or two more, but thats ok. They are still saying about another 6 months or so until I am off the majority of the meds and I can go back to work. Honestly I am in no hurry. My life comes way before work. I am not going to risk my health over a job. Sure we need the money, but what good is it if I am dead.
So my one year bone marrow biopsy is scheduled for the 24th of this month. Yay more pain and another hole in my hip. Oh well such is life. they will do some more in depth blood work to make certain I am still in remission. I will report back when I know the results.
Oh yeah the bad news. My memory is not so good. It seems to have gotten worse. They had me give some blood so they can see if I have a brain virus.
I don't have the results back yet. They don't really think that I have a brain virus. They feel it is more related to the stresses and anxiety of the whole process. They say that I have hit a wall. Maybe I have I don't know. Things do get tough sometimes.
Anyway, some weird coincidences. I met several people on another forum years ago. When I told them the news of my illness, one person in particular came forward and talked to me about how his friend had the same thing as I did just a few years aerier. Some may just pass it off as nothing. The cancer I had is MDS not what I would consider rare, but not very common especially for people my age. It generally will affect older people late 50's or 60's. His friend was about the same age as me when he got it. Strange I thought. This same fried of mine from the other forum, when I told him about the the Campath treatment I was on, felt he had heard the name somewhere. It turns out his mother was the lead person for the pharmaceutical company that developed Campath that helped to get FDA approval for it. It is a strange world we live in. Treat people with respect and dignity, you just never know when they might save your life.
On a sad note. My friend Charlie is getting married in a few weeks. A couple of months ago his father died unexpectedly due to complications from his condition. He died the night before he was supposed to go in for surgery to correct the problem. I found out just before I wrote this that now his mother has died as well. It is a very difficult thing to loose someone close. It is even more difficult to loose both of your parents. Let alone loose them so close to what is suppose to be the happiest day of your life. My thoughts and prayers go out to my good friend Charlie and his soon to be wife Ellen. Life is short and precious. The arguments you have with your family and friends may seem valid at the time. But in the end they are not worth anything. You can loose someone in the blink of an eye. Don't take them for granted. I tell my family and friends that I love them all the time. I don't feel any less of a man for doing so.
Ok I cannot leave this on a sad note. My doc still has forbidden me from playing paintball. Argh! I want to play. But I still need to be careful. I have been able to do some more shooting which has been great. Also we went to our first movie in a long time. Transformers! Robots in disguise! My wife and I could not wait to see this movie. We love Transformers. I grew up withe them. While it is easy to pick the movie apart, and gag on the GM stuff. I thought it was awesome! Saw it on the Ultra screen, while eating a pizza, popcorn and nachos. All in my wide plush rocker back chair with a table next to me. The new theater is fantastic! We have tickets to see Harry Potter tomorrow in the same theater, with the same reserved seats. I think like all of the previous HP's this should be as good. Maybe he will not be such a dolt, and start figuring things out himself. Sorry I have never read the books.
Well now to see if this post is to long and if I have to break it into 2 posts.
I have said it before and I will say it again. Life can be lost in an instant. Most arguments are not worth the trouble. Don't forget to tell people you love them. I love every one of you that has helped me get through his incredibly rough time in my life. Your deeds and caring will not be forgotten. I wish nothing but good health and prosperity on all of you.
When in a fight for your very existence. Never give up! Never surrender!