It's On...

Well, it wasn't easy but I've finally started the SAHA/Niacinamide trial...

I didn't think it was going to happen.

I got to the airport on time in Detroit, the flight was smooth and even managed to find a $10 bus from LaGuardia to Manhattan so everything started so smoothly. The only problem I had was a nagging headache that day that I was able to control with Advil. Unfortunately, the headache turned into chills and the chills turned into sweats and before I knew it, I had a 102.3 fever in my room the night before I was supposed to start the trial, ugh...

So, here I was, in my room thinking that there was no way they're going to let me start this trial with this fever. So, I took some more Advil, went to bed and hoped for the best. Turns out, I woke up, took my temperature and the fever was gone! I think I must have had a delayed reaction to my last infusion of IVIG. So, re-energized by my good fortune, I decided to walk to NYU from my room which is about 1.4 miles. This is a pretty big accomoplishment for me as I haven't walked that far in several months. It was a nice day so I put my headphones in and went for it. It wasn't that bad and actually invigorating! I was pretty sweaty by the time I got there so that was kinda weird... No biggie though, I went up to the counter, got the paperwork, filled it out and waited for the next steps. 45 or so minutes later, they called my name and I went back for blood draw. The guy who was to draw my blood barely spoke English and I was trying to ask him if he could use an IV that could be used for blood draw and PET/CT scan (20 guage needle) so I didn't have to get poked twice.

This is when the wheels fell off the wagon..

I was told to go back out to the lobby and wait again, ok. An admin assistent came out to get me a couple of minutes later and we walked down to the radiology floor where she was going to request them put the IV in and also draw my labs. They didn't want to have any part of it, ugh... So, we then went back up to the seventh floor where Dr.O's P.A. hurridly took the initiative of placing the IV, doing the blood draw and then telling me I needed to rush down to the 2nd floor to get my scan, which I did. Unfortunately, by this time, the radioactive sugar that they were supposed to inject me with had expired and the PET/CT scan was off and any hope of starting my new trial on the planned start day seemed lost. I needed to regroup because at this point, I was pretty pissed. So, back I was sent out to the lobby to wait while the people who are resonsible for my well being devised a plan. Out comes Sean, the trial coordinator who happpens to be a great guy. Sean carefully apologized and explained what happened. I won't even go into the reasons because they don't make sense to me. He was able to order another PET/CT from Park Ave. Imaging and had a car come pick me up to take me over there. I ended up getting scanned and finally got back to my room at around 7:30 after starting my day at 11:30. Long day to say the least.

Of course I wasn't able to start the SAHA on Monday as planned because they needed the results of the scan.

So, I regrouped that night, pretty much passing out as soon as I got to my room. I walked back to NYU the next morning and was given the results of the test which weren't as bad as I thought they were going to be. Yes, my disease has gotten bigger in my "paraspinal" area where I've been having the pain and discomfort. The largest node (among 3-4) is 1.3 x 2 x 2.8 cm. It didn't seem like there were any new areas of disease which I was grateful for, only some "suspicious" areas that we will keep an eye on.

Now with all of that out of the way, I was given my pills and took my first dose yesterday. There are 12 Niacinamide pills and 5 SAHA pills (not the 20 I originally thought). That said, I felt a little woozy yesterday and slightly woozy today after taking my second dose but nothing I can't handle. I took a zofran and attivan and think I'm going to go down for a nap.

It's definately been an eventful start to my NYC trip! Looking forward to getting out to see more of the city in the next few days!

Here's what I've got so far...


Had coffee with my cousin Jeff's girlfriends sister at my favorite little park. Turns out Sara is also a Hodgkins survivor who was diagnosed around the same time as me. Thankfully, she's clean now and pursuing a degree in fashion design here in NYC.


This guy was enjoying some of the sunshine on 34th ave! Just when I think I have it bad, don't need to look very far...


The Empire State building is on my walk to NYU from the Hope Lodge!


I kept envisioning King Kong climbing up and fighting off the airplanes while he had the girl in his hand...

I'll update when I can...