Wednesday, June 5, 2013

Flashback #7 - Neupogen sucks!

Picking up after I missed his visit to "sign paperwork" that was actually the most jam packed, informative meeting to date...gah! I made sure not to miss anymore for quite some time. So, one of the first things David would have to do before he could start chemotherapy was to get his white blood cells harvested so they could freeze them for use in the trial later on. When they would blast him full of chemo and knock out his immune system, the white blood cells would help jump start the process of gaining back his immune system quite a bit. But, they needed to be harvested before any effects of chemo. In order to get the amount of white blood cells necessary, they were going to put David on a medication called Neupogen that basically revs up your blood cells. It's actually made from e Coli...apparently works by making your body think it's under attack from infection...kinda crazy! We had a visit with a nurse to demonstrate how to inject the Neupogen. She told us the most common side effect is joint pain in your long bones...this is because bone marrow is where your white blood cells are manufactured. The stuff needs to be refrigerated, can't be shaken, can't be frozen twice...seemed a bit delicate. Anyways, it would be shipped to him and he would need to start injections three days before the appointment to harvest. I think anyway, I don't actually have this written down anywhere, so having to go by memory. On the third day, we'd head to the main Memorial Sloan hospital so they could cycle David's blood through the centrifuge to extract the white blood cells. We would have to stay there a couple of days, as usually it took 2-3 sessions to get the amount necessary. I was thinking that might be kinda fun, a night or two in NYC...just the two of us! That doesn't happen often, let me tell you!
  • I am pretty sure most doctors utter opinions on whims. They give you 4 options and ask you to pick. (I turn a wrench for a living) I like being informed but it would be a lot better to also be told point blank what the best option is. Still thinking about going to a Dana Farber Doc in Boston to get his opinions as well. And pick the one with the best personality and a smile that reaches the eyes.
This is one of the things David would always complain about. When we'd be at the doctor's office, they would lay out a couple of options and then ask, what do you want to do. It's like, you're the expert, what would you do? There's a reason we're driving 2+ hours to see you...you're supposed to know more! lol We never did go to see a Dana Farber doctor until after his second surgery though.

About this time, David actually headed back in to work. He had been doing some work from home, which had been great.
  • My work is actually looking for results from the work they have given me at the house. The nerve. Is kinda cool having to work... kinda feels normal.
He was released by his neurosurgeon to go back to work, about six weeks after surgery.

  • Is so excited about my awesome free food processor that I got with my reward points!!!! Can't wait to start using it! Already made one pie crust with it... Really want to make some hummus! Also thankful that David is able to return to work, hope his first day back is smooth.
By the way, that food processor is still running strong and I still love it! lol
  • I got the go ahead to go back to work. Is kinda cool. I bought a cashmere beanie in case i have to wear a hard hat. Wearing it around the mall i felt like a preppy gangster. I think the new beard makes it :) I need a new pair of sunglasses to get the Travolta look from that one train movie he did.
    David Woolley I got to wait for the glasses for a pic. I've been procrastinating on getting my concieled carry license bit would sure complete the preepy hitman look.
His sense of humor was still pretty intact. ;)

We took this family pic for David's FB profile pic at the end of November.

I honestly can't remember exactly when we headed to NYC for the procedure...I know it was sometime after he went back to work and before he started chemo, which was the first week of Dec. Guess it doesn't matter too much...apparently I didn't document any of this on Facebook. Anyway, I was a bit excited, thought we might have some fun in the city. So, the meds arrive in a cooler. David is supposed to inject himself at a certain time...which is while he's at work. He shoots himself up and immediately his back about spasms out and he's in awful pain. The side effects were supposed to be later on and in the long bones, and instead he gets immediate pain in the small bones of his back. He almost couldn't drive home...and the office is a couple hours away! It was really bad! And he had either three or five days of this...I just can't remember. He was miserable! I think he was way more affected by the Neupogen physically than he was with the year of Temodar he took. He hurt all over...joint pain. We head to NYC so he can be harvested. Basically, he's in a room kind of like a lab where you'd get blood drawn, but with bigger chairs (but still completely uncomfortable) and he gets a needle in one arm, the tube snakes around to the centrifuge that's somehow gonna magically whirl his blood and separate out the white blood cells, then another tube comes from the machine and into his other arm. He would have to be hooked up, with fairly large needles if I remember correctly, can't move his arms really, for four hours...a day...until they have enough. Needless to say, it wasn't fun at all. Also, he's still having to inject the Neupogen each day until they're done. There went my fun time in the city. He was completely miserable. I mean, he was feeling awful! I felt so bad for him!

After the first session, he actually almost had enough! but not quite :/ I think they needed 7 million and he had  about 5 million. It looked like it would only take two days, which was better than the three they had mentioned. We went out to eat at an Irish pub near our hotel...it was pretty good, but David just wanted to get back and lay down!


On a side note, I forgot to mention...after surgery, David's forehead broke out so badly! We figured that it was from being peeled down, it affected the oil pores or something...he hasn't broken out like this before or since...plus, his face was still a bit puffy from the steroids. 

On day two...I can't remember why, but my Dad was in town visiting. It turns out that the main hospital for Sloan is right across the street from where he lived when he was a kid. We had even visited his old neighborhood when I was little. Of course, I didn't make the connection at all until he told me..."you played in this playground when you were a kid." Then it came back to me. So weird! Anyway, he came and hung out with us in the lab room while David got hooked up again...for another 4 hours. The needles were hurting pretty badly, plus it wasn't great not being able to bend your arms. It was seriously uncomfortable...plus the joint/bone pain was unabated. Finally it was over, and they had the necessary amount. His blood cells would be frozen until needed later on for the transplant.

After it was over, we needed to eat. One of David's friends had recommended a burger joint, and it turned out there was one not too far away. Jackson Hole Burgers...it was delicious. The burgers were ginormous!



We headed home...celebrated Thanksgiving soon after. I finally made David a real apple pie with homemade crust and lattice weave top. I told him it was the only time too, cuz the lattice was such a pain!
Mary Catherine Woolley
November 24, 2010
made apple pie (with real pie crust, i usually cheat with that;), swirled pumpkin cheesecake, pecan pie in the oven, spaghetti on the table, about to make a few pumpkin pies...can't wait to eat the fruit of my labors  lol
David finally started his first round of chemo on December 3rd...almost two months after surgery.

David Woolley Pensacola sure looks a lot nicer then CT. Doing pretty good. Took em two months but we are finally starting treatment now. Its nice having a Catholic wife. Her mother sent some water from Lourdes, France. I took my first few pills with it.

We were so nervous. The chemo came in the mail, and the bottle was in a bag with bio-hazard warnings all over it. It's pretty intimidating. He took his nausea medicine at 9:30 pm and then his chemo at 10:00. The thinking is take it on an empty stomach then go right to bed. His regimen would be 5 days of chemo and 23 off...4 week cycles. At this point, David was still super worried about taking his meds all at the right time. I actually had an alarm on my phone for 8:00 am and pm so he would take his meds on time. We would get worried whenever he was 30 minutes late...lol...now it's old hat. He forgets, we're like, whatever. You don't think you'll ever get used to it, and feel like you definitely shouldn't...but you do. It just becomes the new normal. Anyways, that first dose...boy, we were praying for a long time and so nervous! He didn't feel anything for a few days. Basically, most cycles turned out to be like that...he'd be fine the first few days. By day three he'd start feeling a little bad, days 4, 5, and 6 would be pretty sick feeling and then he'd start feeling better gradually. His blood counts were always good though, praise God. Temodar doesn't cause hair loss either, so he kept it all. It does have a cumulative effect though, so as he got more cycles in, the worse those days would feel. He was able to keep working just fine though. He never actually threw up with the Temodar, just would have really bad nausea.

Here's David's take on chemo...plus he talks about making his radiation mask (which we didn't end up using). Unfortunately, this is the last video he made. :( Now I'm gonna have to totally go by memory.



And yes, chemo farts are known...bwahahaha
See, they even have t-shirts!