NIH in the news
I was checking out the news this morning on cnn.com and came across an article about an experimental treatment for liver cancer. Low and behold the research started at nonetheless, the NIH! Every time I hear of great stories like this one it just makes me more and more sure that Gary is in the RIGHT hands up there!
Home Sweet Home
After a LONG day at the airport, yup we got lucky again and ended up with a 3 hour delay this time around. Unbelievable really! Apparently there were thunderstorms and BWI wasn’t allowing planes to land so our plane ended up circling the airport so much that they had to fly to Richmond to refuel. It was beyond frustrating but the only good thing that came out of it was that we were able to get on the plane in the first group of passengers because I told the guy at the gate that Gary just went through chemo and its not the wisest to have him boarding with a HUGE group of people at the same time.
We ended up arriving around 9pm. Our wonderful friend, Kris, was waiting outside the Gate for us. It’s nice to know that you have a friend that not only will come pick you up, but will come inside, AND more importantly will come at whatever time you needed since we were supposed to land 3 hours earlier. Thank you Kris we sooooooooo appreciate it!
It’s been a rough few nights back. But it’s all short lived, we will be heading back to the NIH soon enough. We are enjoying every moment at home though, as best as we can.
So far no fevers for Gary!
In the home stretch
This morning around 6am Gary finished his last bag of EPOCH. They started him on the Rituxan. When I got to his room around 7:45 he was still sleeping. The physician’s assistant came in shortly after to check on him and he was telling her that he was getting kicked in the ass by this one and that he was feeling sorta itchy. She turned on the light and low and behold he had a rash on his abdomen and also up by his collar bone. They immediately stopped the infusion and gave him more benadryl. They gave the benadryl some time to take and then once he was feeling better they started the Rituxan back but at a lower rate of dosage.
He is finally finished with that bag, just had his 2nd blood draw of the day and is now getting started on the Cytoxan which will take only 30 minutes. And then he’ll be finished with round 1 of chemo!!!!!
If this wasn’t real before
Boy is it real now!
Gary’s nurse just came in to go over what will happen tomorrow morning. He’ll get the last two chemo drugs as soon as his 4th EPOCH bag runs out. They’ll start him with Rituxan and once that is finished he’ll get Cytoxan. He should be done around noon tomorrow. They have 3 more blood draws to do and they’ll be doing his vitals several times during those two drugs because he can have a reaction to them.
She went over how he’ll need to take his temperature daily and will be in close contact with the nurses up here at all times. If his temp goes above 100.4 he is to go immediately to the ER. I asked her if this is common and if we should expect an ER visit at some point, and she said yes. It’s not that we’ve done something wrong, its just how his body handles it so yes at some point we will more than likely be going to the ER because he’ll be neutropenic. Good to know!
She went over foods to eat and the injections he’ll need to give himself until the nurses tell him to stop. She also went over hand hygiene and just overall common sense about how he doesn’t need to live in a bubble yet he needs to be aware of his surroundings.
It’s just crazy! I know we’ll get used to this new way of life but WOW, if things haven’t changed yet, they sure will change as soon as we leave that front door on Thursday.
I’ll take 1 order of Good News please
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!!!
Ode to a Grumpy Old Man
Oh how I HATE the. Our first encounter with you was the first time Gary got up to go pee in the room the two of you share and instead of knocking like the big ole “Please knock before entering” sign on the door should remind you, you decided to just walk right in. Ummm yeah great first impression of you!
Oh and let’s not forget how you tried to gas us out of the room the other day with the foulest stench that could EVER come out of someone’s ass. Holy hell you probably should have someone check out your colon while you are here at NIH.
Then there’s the eating. The chomp chomp chomp SLUUUUUUUUUURP. MY LORD you eat like a freaking cow! Shoot I’d venture to say that a cow is probably quieter than you.
Oh and how about the freaking TV BLASTING on your side of the room. Did you somehow forget that there is someone on the other side that just might want to hear what THEY are watching???? OK I’ll give this one to you, you are old, therefore you must be deaf because why else would you blast your TV so loud. And if you aren’t deaf, then while you are here I recommend you also get your ears checked 
And the topper, I’m over here sitting on this tiny chair that is oh soooooo comfy…..NOT! And you have this fancy comfy chair with this high back that would be just perfect for me to sit in all day long but you aren’t using it. I asked the nurse for a comfier chair and she noticed yours, but when she asked you if you were using it you not only said NO but you won’t let her give it to someone who would put it to good use. Asshole!!!!
You’d think that someone with cancer would be nicer and more appreciative of people. Nope not you! So go on and be the grumpy old farting, loud chewing, and loud TV watcher you are, you miserable old man.
First full day of chemo
It actually went pretty well. Once Gary was on the EPOCH he was feeling fine. They had already told us that side effects from EPOCH are usually delayed so we were expecting an uneventful day and we got it. That’s not a bad thing of course. Gary’s appetite is back which is GREAT. He still had a headache today but it is getting better as every day goes by which is also good news. We are hoping tomorrow it’ll be gone enough that he’ll be able to tolerate a ride around NIH in a wheelchair. That way we can get him out of his room.
He’s been encouraging me to get out and do something. He knows I have friends up here but I guess in a way I’ve felt sorta guilty to get out and have fun. Well two of my good friends, Kim and Allison, who we had met up with back in April to go to the zoo agreed on a girls night out in Bethesda. We had a fabulous dinner at Lebanese Taverna which is REALLY REALLY good. Then we walked around since there are a ton of restaurants and shops nearby. Pretty cool area. Nice to know for future trips, especially when we stay in Bethesda. It was a nice night out. It was really nice to get out for a few hours and not have to think about all of the ups and downs we’ve been going through. Of course once I got back on the NIH campus I had to stop by to see Gary to make sure he was doing ok, and he was fine. I knew he would be
Chemo Night 1 Update
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
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
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…..
A recent widow and single mom doing my best to survive on my own.
Last year I told Gary that I'd raise $1k at the 2010 walk, please help me reach my goal. This year Gary is one of the Honored Heroes for the walk so its even extra special to me. :) Just click on the Sponsor Me image to be taken to my fundraising page. Thank you!!!
Help me get to my 1st Half Marathon in Walt Disney World where I will run in memory of Gary :)
