Round 4 over and DONE!
Here we are again on our way back home from yet another round of chemo. It’s been a quick trip. Can only hope the last two go this fast. Gary is officially starting the detox stage of chemo. He should start feeling better after the weekend. I’d knock on wood but we are on the shuttle headed to the airport so I’m asking my readers to do that for me 
Till next time NIH!
Ordered to EAT!!!!!
I knew it was coming, and secretly was hoping it was going to come. The doctor’s yesterday basically ordered Gary to eat and eat high calorie and high fat foods because he has lost over 40lbs since he started chemo back in June. That’s WAY too much weight loss, especially for a person that really didn’t have much weight to lose in the first place. We met with a nutritionist this morning that gave us a packet with all kinds of ideas to get him calories.
It does sound like they might even give him something to help increase his appetite. The doc did mention something about a marijuana-like medication that will help give him the munchies.
Right now he’s getting the last bit of Siplizumab (I don’t think I ever spell that right) and they should be switching him to his 24hr EPOCH bug within the next 15 minutes or so. Then we’ll be off to the hotel and I’ll be off to the supermarket in hunt of high calorie munchie type foods for the hotel.
Now I just need to keep MYSELF from eating this stuff because as he loses the weight I’m gaining it.
What a trip home!
We’ve been home for almost two full weeks and poof its almost over. 
It’s been a ROUGH trip home, not as pleasant as we had hoped it would be.
It started off with a bang too. The first weekend we were home Gary was back at the hospital. He started fainting so after the 3rd fainting spell I started calling doctors and all of them insisted that it was dehydration. He ended up being admitted for a few days, came out doing well but pretty neutropenic.
Speaking of…..he’s been neutropenic a lot longer on this trip because we find out that they upped his chemo on round 3. Apparently he did so well with round 2 that they justified upping his dosage even though he was coming into round 3 with unexplained fevers. I guess what pisses us off the most is the fact that no one told us until this little piece of info slipped. Oooops!
So here we are the Monday before round 4 starts. We leave back to DC this Wednesday. Woopty Freaking Do! I never look forward to going back to DC. I love DC. I think its a great city, but I hate the reason why we have to go up there. I hate having to leave our comfy home to go stay in a hotel for a week. I hate leaving our little Mikey at home, even if he’s safe an sound with grandma. I just want this all to be over. To have our life back to the way it used to be. How silly of me to even think that this is a possibility. Our lives will forever be cancer struck. Yes we’ll get past this but it doesn’t mean cancer will never be on our minds. Gary will forever have to go for follow-ups and we’ll forever be worrying that its back.
How odd to think that our once not-so-simple life is actually EXTREMELY simple compared to what our lives are now. I won’t complain because complaining gets you nowhere. But I will say this, cancer sucks for everyone involved. I cannot imagine what Gary is going through inside. I know I’d handle things way differently than him that’s for sure. We are just different people that handle being sick VERY differently, but I know that I’d hate cancer just the same if I were in his shoes. I would never wish cancer on my worst enemy, that’s how bad it sucks. It breaks my heart to see my once healthy husband wither away in front of me. He’s literally skin and bones now. He’s having a hell of a time with the treatment. If its not dealing with fevers, or migraines, its dealing with a nose that is almost as runny as the faucet in our sink. It’s beyond sad and it hurts me like hell to see him suffer. I want nothing more than to take the pain and uncomfortableness that he’s in away. I guess that’s what any loving spouse would do for their significant other right? I know he’d do it for me in a heartbeat, but I hope he never has to.
He’s fighting for his life and more than ever do I want him to win.
Brain Surgery who would’ve thought!!
This morning I made sure to get here bright and early. Just tied my hair up, changed, and rushed over to his room. Glad that I’m staying at the Safra Family Lodge across the street!!!! The doc was in at 6:40am (so 5 minutes early), he examined Gary again and told him they’d come for him between 7-7:15am. That turned into 8:30am. We got to pre-op and things started happening FAST. Nurses, anesthesiologists, and doctors all coming in one after the other. Around 9:30 they were ready to wheel him to the OR. I took the opportunity to find the waiting room and then head back to the lodge to bathe and then grab breakfast before I came back to wait for him. Around 11am the OR nurse called the waiting room to tell me that they started the surgery at 10:30 and that he was doing GREAT. Fantastic news!!!
Around 11:30 the two neurosurgeons came in to talk to me. Both told me that he did great. Yay! I waited a few minutes and found the recovery room. Just so happen someone was coming out, so I asked her if this was recovery. It was, I found him. But the nurse did not like that I was there. I quickly checked on him and then left back to his room. I found out that they do not want him leaving tomorrow as previously planned. They want to do his first dose of chemo using the new port to make sure its working properly (makes sense but UGH!!!). They are thinking we can go home on Friday, I sure hope so. I REALLY hope so!
Gary had a CT Scan this afternoon to check on the placement of the catheter and to make sure there was no bleeding. He has a few air bubbles in his brain but this is normal. They have him on oxygen which supposedly will help with this. They’ll have to redo the CT scan before we leave because he can’t fly with air bubbles in his brain. As for bleeding he has just some where the site is but nothing in his brain which is great news. He is in GREAT spirits. His appetite is back. He’s on the last 2 drugs of round #2 right now. So he should be disconnected some time tonight!!!!
We are hoping that this is our turning point. From here on out everything will just be getting better and better.
Oh and I have to just say WOOOOOHOOOO because this morning the doc came in and told him that his platelets were 202 as of yesterday. Ummmm this may not mean jack to any of you readers but to us this is FAN-FREAKING-TASTIC news. Low platelets are usually around the 140s, his have been at that or lower for the last 2 years. So for it to be in the 200′s. Holy SHIT! That’s just beyond awesome. So if that ain’t a sign that this crap is working, then I don’t know what is!!!!
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.
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!
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 :)
