And so it begins…..again

Posted by Sammy on Jul 3rd, 2009 | one comment

I’m sitting here in Gary’s room as he officially starts round #2. The nurse just came in and started his IV of Siplizumab. This is the drug that caused him to shake violently within an hour last time around. Hopefully he won’t have the same kind of reaction this time. He had his spinal tap the other day and even that went better than last time. He had a minor spinal headache yesterday but it was no where near what it was last time which is GREAT news. We did meet with the doctors yesterday and they basically told us that if the results are negative he will still get a dose of chemo into his spinal canal on day 1 for the next 4 treatments. If it is positive he’ll be getting an Ommaya reservoir put in immediately and they will begin chemo before we leave here.

Here’s to an uneventful chemo session and NO need for the Ommaya!!!!

Chemo Night 1 Update

Posted by Sammy on Jun 13th, 2009 | no comments

I got to Gary’s room right around 7 this morning. His nurse came in to draw blood like she had been doing throughout the night. I asked her how he did and she said GREAT. At one point he opened up his eyes and talked to me and told me that the only reaction he had were intense chills that came on all of a sudden about an hour and a half after they started the Siplizumab. The nurse covered him with a warm blanket and gave him another dose of benadryl which controlled them. He didn’t get any of the other side effects though which is GREAT.

He is currently on his pump of EPOCH. It’s in a fanny pack that he can wear. Depending on his headache he might be able to get a pass so that he can get out of the hospital for a little bit, I guess we’ll see when he’s really up. Right now he’s so drugged up all he wants to do is sleep.

T-Minus 1 hour

Posted by Sammy on Jun 13th, 2009 | no comments

The time has finally come. Our lives will forever change in an hour. My wonderful husband, the love of my life, will officially become a cancer patient in 1 hour. All of the crap he’s had to go through leading up to this is nothing because you can get all of those tests done without being a cancer patient. But in an hour he’ll start chemo, and only cancer patients get chemo.

I had to leave his room because it was getting late and I was starting to yawn and get sleepy. It’s been a LONG day at the hospital and its not THAT entertaining over there. It just broke my heart saying goodbye to him. I know he’s in GREAT hands, without a doubt probably some of the BEST hands. But I hate the fact that he has to start chemo while I’m across the street attempting to sleep. His night nurse was kind enough to stop by while I was there to explain what will happen tonight in detail. In half an hour she’ll give him tylenol, benadryl, and demerol. All to help with the effects of this first drug, Siplizumab. As soon as the Siplizumab is done they’ll begin EPOCH which should be nothing because he won’t really have any effects while up here. The effects will be delayed and more than likely will occur when we get back home. Oh the joy!

Wow this is finally happening!

Day 2 in Bethesda

Posted by Sammy on Jun 11th, 2009 | no comments

Started off with a BANG that’s for sure. I got up early because I wanted to make sure we were all packed up before we headed to NIH since we had to check out of the hotel by noon. I went downstairs for breakfast at 7, alone since Gary wasn’t able to eat before his CT scan. Got back upstairs and Gary told me that we had a problem. Apparently he made it to the bathroom and made it back to the bed but he had a severe spinal headache. It was the kind the doc that did the lumbar puncture (aka spinal tap) warned us about. It was an intense headache at the base of the skull and the only position that helped him feel better was laying completely flat. Even being at a 30 degree incline hurt. So I started calling everyone I could at NIH to figure out WHAT to do. We had to get there because only they could help BUT the question was HOW!!!

Finally around 10 Gary got the courage and said if we are gonna do it then it has to be now. So we got up and I got the elevator real quick since it was SUPER slow and he came when he was ready. Got him downstairs and we just so happened to get downstairs just as the NIH shuttle was getting ready to leave, perfect timing.

Gary laid down the entire ride to NIH. We had the shuttle to ourselves, got really lucky with that. Once we got there someone was getting into a car from a wheel chair and I took it from them which worked out perfectly too. I wheeled him up to the unit he was in yesterday afternoon and they started him on IVs and morphine. I went back to the hotel to grab the rest of our stuff and to check out and came back to him. While he was IVing up I went downstairs and got my fancy shmancy NIH extended visitors badge.

I had lunch and it was then about time for us to go up to clinic. Yup we had to unhook him and drag him upstairs for clinic. For some reason they can’t come to you. So I wheeled him upstairs and we met with his “team”. They were all very nice. I didn’t expect them to be anything but nice because EVERYONE and I do mean EVERYONE here at NIH have been super nice to us. It’s such a stark contrast to what we are used to back at home. Shoot if all healthcare was like this NO one would be complaining about the crappy US healthcare system.

They explained everything about the drugs he’ll be taking and how they all have various side effects.

I’m hoping Day 3 goes a lot better than our last 2 days up here. It starts with his CT scan at 9am, since he missed it today. Then they’ll start him on prednisone and then about 8 hours later they’ll start him on the drug they are trying out in the trial called Siplizumab.

Stay tuned…..