I’ll take 1 order of Good News please

Posted by Sammy on Jun 16th, 2009 | no comments

Seriously, can Gary get some freaking good news for once. He’s been breezing through chemo which is great but boy did he get slammed this morning when the team of doctors came in.

Oh and about that, I’ll admit I think its pretty darn cool to have 10 doctors fill up your tiny room to talk about YOU. People in the back having to stand on their tippy toes to get a good look at the patient.

Ok so back to my post, the doctors came in this morning and started talking, towards the end his doctor points out that the lumbar puncture (aka spinal tap) came back showing that he has the same lympocytes that are in his blood in his spinal fluid. There is a slight chance of contamination so they’ll want to redo the spinal tap when he comes back for round 2. UGH! If he does have lymphocytes in his spinal fluid he’ll need to begin chemo into his spinal fluid twice a week. Thankfully it would be with a fairly common drug that his local oncologist could administer. So he could do that part at home.

But man enough with the bad news already!!!

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…..

So Helpless

Posted by Sammy on Jun 10th, 2009 | no comments

The day started out pretty good. We got up, had “breakfast” downstairs in our hotel. Then hopped on over to the Metro and got over to NIH just in time for Gary’s Apherisis. He got all hooked up and did sooooooo well. They thought it would take 1.5 hours at least but he was done within 45 minutes. We had time to chill out in the courtyard for a bit before it was time to head upstairs for his Lumbar Puncture (aka spinal tap). I got to finally meet George who is THE guy apparently for bone bone marrow biopsies and spinal taps. He is AWESOME and you’ll soon find out why I now think he kicks ass!

He performed the LP and Gary had to lay flat for about an hour. After that we hopped across the hall to one of their outpatient wards for a HUGE blood draw. The research nurse wanted him to go there instead of phlebotomy because of the fact that it was a large amount and she wanted to make sure there were nurses there nearby. Good thing because he started to get a really bad headache that got worse and worse and worse. They called George up and he came by and prescribed some percocet for Gary. Gary took it but it hardly did a thing for him. He was also feeling extremely nauseous on top of the headache too. The entire time he was in there George came in and out to check on him. That to me is a GREAT doctor.

So back to the story…..He needed to eat but he felt too sick to do that. So finally they gave him an anti-nausea medicine and not even 2 minutes later he threw up, good thing he had the trash can nearby. After he had his puke-fest he felt soooooo much better. He was no longer nauseous and his headache was practically gone too. Hallelujah!!!

They gave him some ginger ale and he seemed to be holding it down so they let us go back to the hotel (after they did an EKG of course since that was the last test to do after the large blood draw). As we were walking out of NIH he started to feel queasy again. We got on the shuttle to our hotel and the entire ride was super shaky. I knew this was not going to help him, and I was right because as soon as we got back to the hotel, even before we could get onto the elevator he puked 3 more times. Good thing they have a door by the elevator because he was able to run outside.

So he’s been sleeping for over 2 hours now with hardly anything in his stomach. I feel absolutely helpless. Poor guy has a CT scan in the morning and he’s not supposed to eat before that so he’s going to be STARVING. I just hope that the barium that they make him drink doesn’t come back up like everything else has today. If it does then tomorrow too will prove to be a very interesting and LONG day.