Three Updates in a row? update 4-29-2009

It has been rare that I have updated this blog on a regular basis lately. The stars and planets must be in a rare alignment, since I believe this is my third update in the space of a week. My advice to you is to enjoy it while you can; it may not occur again :)

I was watching Obama do his Town Hall thing earlier today, and while I think he's great, his style is still more of a candidate then a President... You have the job; you don't have to convince us to elect you.

I think the swine flu thing is completely hyped out of control. Remember, 36 thousand people die of the flu every year. That's a lot of people, just from your normal H1N1 virus. The media gets a hold of something and runs with it and people get panicked.

Glad to see the Red Sox dominate so early in the season, and nice to see them sweep the good ol' MFY's (motherfu%^&*g Yankees, as we Sox fans like to call them). The Yankees will be fine, though. It's a long season and a lot can happen. As long as they finish behind the Sox, it's all good.

The Dodgers are looking good too - Sox Dodger world series? That would be pretty cool.

Update April 28 2009

Thank you to everyone who commented on my last blog post :)

I tell the bad with the good, however; and today I am a bit irritated.

First, I found out my oncologist is recommending that I begin active chemotherapy next week. I was hoping that chemo would no longer be necessary after going up on the long acting dose of sandostatin; but apparently that is not the case. There are some complications that need to be resolved, however. I have an abscess in my groin which is slow healing, due to my diabetes and also taking a course of steroids. Chemo will slow the healing even more and the wound care specialist is recommending that I not have chemo until the wound has healed a bit more. I also will be going to New York in June for my cousin Alison's wedding. So, it is possible that I won't do chemo until I get back. The nurse will consult my oncologist and let me know.

As I mentioned in the above, I have an abscess which is taking its sweet time to heal. The nurse was concerned enough to bring in an wound care specialist to take a look at it. He made some recommendations, including swabbing it for a culture. I am at the point where its become a real pain in the ass (or groin, specifically) to deal with this thing and the daily requirement that it be cleaned and packed. I want this thing to heal up and because of extenuating circumstances it is taking longer to heal then expected. That put me in a bad mood. Physically, I'm feeling good: no pain, my blood sugar is good and getting lower, etc. It's just the little things that are beginning to annoy me once again.

Simple Pleasures Update 4/21/2009

Waking up in the morning pain free.
Knowing that I am in good hands regarding my medical treatment.
Feeling the love and support from my friends and family.
Having a kick ass, beautiful apartment, and a great on site manager who actually cares about me as a person.
Being able to watch my blood sugar drop daily and knowing I am on the right track to controlling it.
Knowing I am losing weight and eating well.
Making a two egg omelet (I got a microwave omelet maker which makes a simple process even easier).
Having a toaster that works.
Seeing a marine layer outside and knowing I won't have to use air conditioning.

I feel good. I am incredibly grateful.

update April 19 2009

This will be a mish mosh sort of update -

All went well at the GI doctor. Although I still have a little blood he is not concerned with that. I did unfortunately have an abscess on my groin which required very minor surgery, which I got Friday. I am very lucky to already have access to a home health care nurse who can clean and dress it. It is sensitive to touch but it doesn't really hurt anymore, and the nurse says it's healing nicely. On the crohn's front, it is most likely I will go on a new drug called remicade, which I understand is administered through an IV. Apparently, I will get this, along with whatever chemotherapy treatment and bone density treatment I get, through my IV port. When I know the details, I'll pass them along.

In general I'm feeling quite a bit better. The sandostatin doesn't seem to be affecting me at all, which I'm glad about; but to be honest I am on so many different drugs right now I couldn't tell you which one is causing what side effect, and they all have similar side effects. I found that I can manage the anxiety and irritability caused from the steroids by taking a small amount of xanex along with my morning dose. This makes me a bit tired but not tired enough not to function. I am monitoring my blood sugar and giving myself insulin 4 times a day, which can be a bit tedious. It is beginning to become routine, though, and I suspect I won't even think about it after a while. I have also changed my diet. I was eating quite a bit of sugar because the chemotherapy completely destroyed my appetite and I was basically encouraged to eat whatever I wanted. I'm currently not doing chemotherapy, and since my blood sugar is affected by the drugs I'm taking, I have had to switch to a diabetic way of eating. It's boring, but it's boring by my choice. I certainly could spice it up, but I find that my asperger rigidness is a real help here because I don't mind eating the same things every day. As I feel more comfortable, I am sure I will experiment more; but for now, boring works.

Lawrence came over last night to watch the Phillies - Padres game with me. It's the first time I've seen him in about two months and we had a nice time. I really have lost touch with many of my friends as I have gone through this rough patch and I need to make an effort to reconnect with them.

In closing I want to again say how thankful I am to my family, friends, and support people who have helped me so much since I got out of the hospital. I am an incredibly lucky person to have so many people who care, including those of you who read this blog.

Update April 16 2009

Things have been up and down for me since I got home from the hospital. On a positive note, I was able to finally go on the long acting dose of sandostatin, something I have not been able to do up until this point. The sandostatin is the recommended treatment for the neuroendocrine tumor but up until now I haven't been able to tolerate the side effects well enough to go from short acting shots to the more effective long acting. So far things are OK, but I am on so many different medications it's hard to tell what is doing what.

The steroids I am on are giving me a hard time. I want to eat constantly, which is a problem because I am also trying to control my blood sugar. I sweat a lot more as well and feel anxious. I'm taking xanex which helps some.

I have an appointment with the GI doctor today, so we'll see what he has to say about how things are going.

April 12 2009 Update

I had been feeling very sick on and off since I last updated the blog. Things took a significant turn for the worse about two weeks ago when I began to experience the worst stomach pain I've ever had. I also began to see blood in my stools. Long story short, I was admitted to the hospital a week ago Saturday. They put me on IV anti-biotics and did a colonoscopy as well, and it was determined that my chrons disease had flared up causing ulcerative bleeding. I came home from the hospital last Friday and I'm feeling much better. I am on a very strict medical regimen now including monitoring my blood sugar three times daily and administering insulin to myself as needed. I'm also on steroids and a bunch of other medication. This has been by far the most painful experience I've ever had to go through, including the cancer. I know this is a matter of fact update and I will try to write a more emotional update in the next few days. The important thing is that I am feeling much better.