So Brian had his surgery on Wednesday. The Doc said it went well and they removed almost the entire thymus. He said the thymus put up quite a fight and didn’t want to come out. Apparently, it is a badass just like Brian. Brian was in a fair amount of pain for the last two days, but you couldn’t tell by looking at him because he’s such a trooper. They took out his chest tubes yesterday and we’re guessing they’ll probably send him home today. I’m going to go visit him soon and hopefully a doctor will have told him he can leave. Yay!

Brian is going home today! Yay!! He did very well with the chemo this time. I’m so proud of him. In a couple of days he starts the Neupogen and a few days after that they start collecting his stem cells. Let’s hope for a quick collection!

Brian seemed to have an OK weekend. He was pretty bored, but I brought him his PlayStation last night that he can use for games and for regular DVDs. This should help a bit.

He had a rough night last night though. He said he couldn’t breathe well when they woke him up for vital signs at 12:30 last night. He had the hardest time getting the nurse to understand that he wanted an inhaler. There was a huge language barrier that was really frustrating for him. They finally sent him a respiratory therapist who seemed to help. He’s also quite frustrated that every doctor that comes into his room doesn’t seem to have read his chart before they start talking to him. One Dr came in this morning and said “so, did you have a good night?”. He had a terrible night and the Dr should have known that.

We’ll bust some heads today and get all that straightened out.

I just had a nice lunch with Brian. His hospital-issued food was roast beef, mashed potatoes and peas and a slice of chocolate cake. He still has a good appetite and ate most of it. The nurse dropped by and said that his blood sugar level was high (300+ when it’s supposed to be around 90 something) and that was because of the Decadron. Decadron is an anti-nausea medicine and a steroid so that will make his blood sugar go up. They gave him a shot of insulin and they’ll check his blood three times a day. Once he stops the Decadron (when chemo is over), his blood sugar will go back to normal. He still feels good although pretty worn out.

We finally got to meet again with the Stem Cell Transplant coordinator. She gave us a big calendar with what will be happening over the next month or so. Yikes. All of the definite dates will depend on his blood counts at any given time, but in general it looks like he’ll get the current chemo until Monday night (4/3) and then he’ll start getting 2 shots of Neupogen a day starting on 4/5 for about 6 days. If his insurance allows it, I may be able to give him those shots at home. He’ll have to get blood work done on 4/6 to see if he’ll need a blood or platelet transfusion. At that point after chemo his blood counts will have bottomed out and there is a good chance he’ll need a transfusion. Depending on his counts, he may have to get blood work done over the weekend as well.

On 4/6 he’ll also go to the apheresis lab and have them check his veins to see if they’re accessible for the stem cell harvest or if they’ll have to put another catheter into his chest. Regardless of whether he needs a catheter or not, he’ll probably start collecting his stem cells on 4/11. This can take anywhere from 1 to 6 days and each day is several hours hooked up to the machine.

Once they’ve collected enough stem cells, they’ll do another PET scan. This is to see if this chemo that he’s doing right now is killing the cancer. If they’re not happy with the results, he may have to do another week of chemo just like he’s doing now. If the tumor has shrunk or disappeared, he’s ready for the high dose chemo called “BEAM”. This chemo will take about 6 days and will be a combination of being in the clinic and at home. I think she said if he’s home, a visiting nurse will administer the chemo to him. I’m not sure how this will work yet, but home is good.

The beginning of the high dose chemo is called “day -6” because it is 6 days before the day his stem cells are given back to him. The day he gets the stem cells back is called “day 0” and each day after that is “day +1, day +2, etc”. Oncologists are clever, huh?

Starting on Day +2, he’ll have to be close to the hospital in case he gets a fever or something. Since he’ll basically have no immune system, it’s not good if he gets a fever and will have to get IV antibiotics immediately and be admitted into the hospital. To make this easy on us, they will put us up in the Marriott Long Wharf which is about 5 minutes from the hospital. There is a foundation who pays for the hotel for us. Cool.

This part of the procedure may take as long as 12 days. This is when his blood counts should start to recover and he will no longer need to be so close to the hospital.

We don’t know and they don’t know how much he’ll be able to work throughout this whole thing or if he’ll be asleep for most of it or what. That part we just have to play by ear and I can’t stand uncertainty.

Ugh.

More later after my evening visit.

So I spent a few hours with Brian yesterday getting him settled into the hospital for his week-long inpatient chemo treatment. He’s got a private room and the nurses are great and everything seems really cool — except the TV. It’s got one of those horrible remote controls attached to the bed that only has one button for the TV – channel up. You’re out of luck of you want to go back just one channel. We spent some time being annoyed by it.

Then as I was driving home last night, I wondered if a universal remote control would work on that TV like it would a regular TV at home. I pulled into Wal-Mart around 9:30pm and got a $7.00 universal remote. This morning when I visited Brian we tried it and it worked like a charm!!!! What a wonderful thing! It’s amazing how the little things can really make a big difference. Now Brian can watch ESPN and get hockey news and switch back to Comedy Central when it’s time for the Daily Show!

It should make a HUGE impact on his health. 🙂

Sorry for the three posts. I got impatient and kept hitting the “post” button…

So Brian is in the hospital now and I’m across the street at my office. It’s great that I work so close to the hospital so I don’t have to take too much time off from work and can still visit him and keep the doctors on their toes.

He checked in at noon and by 3:00pm they still hadn’t hooked him up for chemo yet. I started getting sleepy just watching TV waiting for the transplant coordinator to show up so I came back to the office.

I’m sure I’ll have more to tell y’all soon…

So Brian is in the hospital now and I’m across the street at my office. It’s great that I work so close to the hospital so I don’t have to take too much time off from work and can still visit him and keep the doctors on their toes.

He checked in at noon and by 3:00pm they still hadn’t hooked him up for chemo yet. I started getting sleepy just watching TV waiting for the transplant coordinator to show up so I came back to the office.

I’m sure I’ll have more to tell y’all soon…

So Brian is in the hospital now and I’m across the street at my office. It’s great that I work so close to the hospital so I don’t have to take too much time off from work and can still visit him and keep the doctors on their toes.

He checked in at noon and by 3:00pm they still hadn’t hooked him up for chemo yet. I started getting sleepy just watching TV waiting for the transplant coordinator to show up so I came back to the office.

I’m sure I’ll have more to tell y’all soon…