Bye Bye Round Numero 4

Posted by Sammy on Sep 1st, 2009 | no comments

As we get ready to take off for yet another trip to DC for what will be round #5 I figured I’d come online and post an update on how this visit home went. I’d also like to post some things that might be helpful to others going through this that we have figured out in the past 4 rounds, this was brought on by a recent comment to one of my previous posts.

Well this trip home has gone a lot better than the past 3 trips home. No visit to the hospital *knock on wood that it doesn’t happen tonight of all night*!!! No fevers!!!! A pretty damn good appetite! We did learn that with his depocyt injection into his ommaya he NEEDS to take a pill called dexamethasone for 5 days or else you are very likely to have headaches, nausea, a slight fever, neck pain, back pain, hmmmm am I missing something? Yeah so Gary had ALL of those side effects. Why? Because no one reminded us to refill his prescription which there were refills on! So major booboo on our part!!!

You might remember that marijuana-like drug that Gary was prescribed to help his appetite. Well the name of that drug is called Dronabinol and also goes by the name of Marinol. Gary only tried those pills a few times while we were still up in DC this last trip but he hasn’t really needed it since because he has had an appetite. I guess all it really takes is having a few doctors get all up in your face telling you that you NEED to either gain or maintain your weight and that you can eat all of the crap you want NOW when you want it

Some things that he has discovered that he actually enjoys eating/drinking…..Carnation instant breakfast with whole milk and 2 scoops of vanilla ice cream, it makes one fabulous shake according to him. Ok maybe not fabulous, but its pretty good. Another shake mix that he has tried that have something like 600 calories once you mix it with whole milk is called Scandi Shakes. He particularly likes the vanilla flavored shake mixes also mixed with milk and ice cream.

Some of you might remember me and definitely Gary writing about him needing applesauce with his prednisone. Well the reason for this is because he’s taking 200mg of prednisone for the 5 days he is on EPOCH. That’s a HUGE dose compared to what others take. The pills are huge and super chalky as they go down. One of his nurses from his first round actually recommended trying the applesauce to help and it does help most of the time. All he does is jam a pill into the applesauce and he quickly swallows the pill and applesauce before his taste buds can actually detect the prednisone. It works if he’s fast enough and gets enough applesauce to coat it.

Another thing I’d like to share with others is a website his social worker turned me onto since I don’t really have much time go to a support group in person. It’s called The Wellness Community and they have online chat support groups depending on what you are looking for support with. I’ve only been able to participate with 1 group since they happen to meet on Wednesday nights and that corresponds with our travel days. But so far its been a GREAT help.

Alright that’s my update for now, I’m sure I’ll update a time or two while we are up in DC. May round #5 go as breezy as this past one!

Fifty Dollars and Thirty minutes later

Posted by Sammy on Aug 14th, 2009 | one comment

This morning while at NIH we had a nutritionist come see us to give us lots of idea of things Gary could try eating to help him either gain or at least not lose more weight. It was very informative and I definitely have lots of ideas to try!

Well we had also talked to one of the docs this morning and after talking to her she realized that Gary probably needs some kind of medication that will make him hungry. She suggested a medication, that is completely legal, that is just like marijuana, and it should give him the munchies. There is a slight chance it could make him hallucinate and if it does we need to call a doctor immediately (guess they don’t like that reaction). So we’ll see if this works out. I sure hope it does.

Oh yeah and once we got back to our hotel, since Gary is outpatient now (WOOT!), I made my way to the local Safeway to go grocery shopping. While at NIH I managed to call our hotel up and get us a mini-fridge since it doesn’t come standard with our freaking large room. So since we have a fridge I now can buy cold stuff. So half an hour and Fifty Dollars later I walked out of there with this:

Here we’ve got Peanuts, Dried Pineapple, M&M’s, Cheese & Peanut Butter Sandwich Crackers, Carnation Instant Breakfast, Swiss Miss Hot Chocolate with Extra Marshmallows, Applesauce (for the prednisone), chocolate pudding, whole milk, apple juice, and yobaby yogurt (since it is made of whole milk).

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…..