Photos from the SCT

Wow – photos posted in less than 24 hours! Am I turning a corner? Am I unlazying myself? Only time well tell. Click the cancer patient to see the whole set.

GLLAAAAAAARRRRGGGGHHHHH

Today’s Harvest

Well, today was a long, long day, but hopefully a productive one. My blood counts continue to rebound – WBC is at 7,900 and the platelets are up to 33 (see a couple of posts down for the proper ranges). The best part? We were go for stem cell harvest!

Here’s the way the stem cell counting thing works. Dr. C’s magic stem cell number for me is 5 million. When the harvest is done, it takes a count of 10 million cells to have an actual harvest of 1 million. Therefore, my counts would need to be higher than 50 million to be able to do the harvest in one swell foop. My count? 57 million, baby.

Now, this doesn’t mean they have all that they need, so don’t uncross your fingers just yet. I find out tomorrow morning if I have to come back in for more harvesting. They were able to get the machine hooked up through my antecubitals (that inside part of your elbow where they draw blood), so they didn’t have to insert a line into my neck. Barb took many pictures which we’ll have up here in a bit.

Before the collection, I got another couple of Neupogen shots, which might help boost that 57 a bit, as well as one unit of blood.

Now, I have no problem seeing a big water balloon of blood above my head. I have no problem seeing the line come down and go into my port. I had no problem seeing the blood go in one arm, into the machine and back into the other arm. At some point, I had to move the tubes around a little bit, and that red bllod tube in my arm? It was… warm… That was quite unsettling to me, as we all know that warm = body temperature = HOLY CRAP, THIS IS THE BLOOD FROM MY BODY!!!

I felt I handled the revelation well, though. No screaming, no puking, no crying, just an occasional muffled whimper.

Oh, and I also realized what an idiot I was today. At one point during the collection, I had to go to the bathroom. When you’re hooked up to a huge filtration machine, you can’t just toddle off to the toidy any time you get the urge. I told my keeper and she brought me a urinal and pulled the drapes. Just before she left me to my business, she helped me get off of the stretcher and stand up. Shortly afterwards, the bright light of idiocy shined down upon my bald pate.

You see, I have rather limited hospital stay experience. My first extended stay and use of one of those handy dandy urinals was when my hip was dislocated back in ’94. I couldn’t move out of bed, so they gave me the bucket and I figured out how to use it. Thus it was when I was in the hospital for my last round of chemo. They had given me a strong diuretic in the middle of the night to try to calm my asthma attack, so they lined up a couple of urinals for me so I wouldn’t have to keep dragging my IV pole over to the bathroom. Working from prior experience, I… did my business… lying down like I had when my hip was dislocated. Only today did I realize : If my legs work, I can stand UP and use one of these! SO much easier!

Idiot.

Carpet Matches the Curtains

Hey gang, I’m back. Well, I’ve been back for awhile, but I’ve been a bit too tired to get my thoughts together and post anything of note. The hospital stay’s still kind of a jumble in my brain and the time since then has mostly been spent sleeping. I do have a bit of recent news though, so I’ll let you guys in on it.

Since getting out of the hospital, I’ve been having two Neupogen shots a day. These are the shots that boost your white blood cells, like Neulasta but a smaller, more controlled dose. Over the weekend I got the shots down at Yale and on Sunday they drew bloodwork on me. Typical white blood count should be between 4,000 and 10,000. My white blood count was 900. Platelets? They were bad too. They were at 39 and the normal is from 100 to 150.

Anyway, this is bad news. I stand a big chance of getting infected by stuff and/or bleeding all over the place. Good thing my hair’s gone so I don’t need to shave. On Monday, we did more bloodwork (can’t clot well? Let’s stick a needle in you!) and things were better. My WBC doubled up to 1,800, but my platelets dropped to 21. Apparently 20 is the magical barrier where they do a blood transfusion on you, so I got out of having that done yesterday.

The good news? Even though my WBC is still in the basement, its doubling and the fact that my back has been killing me since Monday morning means that I’m currently a churnin’ burnin’ stem cell factory. In a mere couple of hours I’ll be down at Yale where they’ll be drawing some more blood to see if the situation is ripe to start harvesting stem cells. Hot diggity doodley!

So now that I see the time, I guess I’d better wrap this up and start getting ready to leave.

Weekend update

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.

Lunch update

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.

Barb is a GENIUS!

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. 🙂

Barb’s in charge now…

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…