Thursday, April 24, 2014

April 23 & 24th - Update on Treatment Plan & Going Home!!

Chase's radiation treatments have gone much smoother this week than they started last week.  I think he's down to about 15 minutes in the machine now.   Thankfully, he's also having less discomfort in his neck/incision area.  I think having the weekend off from treatment has given his body more time to recuperate, which makes me thankful that he only had to go two days before a break.

What you're looking at on the left is the actual radiation room.  The table that he stays on, although difficult to discern here, is flat and appears to be nothing short of uncomfortable.  The red object near the end of the bed is a neck support, but it's not meant for his comfort.  Instead, it's means to keep him aligned and have his head in an exact position during the entire treatment.  Although it isn't made of hard plastic, there is very little cushion support to it.

The large white apparatus in the background can actually rotate around him.  I wish I could've caught that in action on film, but I'm not allowed in this room until he's pretty much ready to go.  I wouldn't say Chase enjoys the radiation, but at least he gets to listen to any kind of music he wants while he's in there.  Thus far, I think I've heard Twister Sister, ACDC, Billy Joel's "Uptown Girl" and Rockwell's "Somebody's Watching Me".  Yep, he's liking the 80's music.

And I believe I mentioned in an earlier post about the long underground hallway that connects Egleston to the Winship Cancer.  Here's a picture of it, but WAY down at the end, isn't the end of it.  The tunnel has a significant incline on the way back to Egleston, so you can't see the doors on the other end from the Winship side.   I've pushed his wheelchair up the hill a couple of times.  It's actually been nice exercise!!

Thus far, Chase hasn't experienced any side effects from the radiation that he can tell.   We met with Dr.Natia, the Radiation/Oncology doctor, Monday afternoon.  She did say that any side effects that he may will experience should start showing up toward the end of the week.  We pray for NONE, or as close to that as possible, please.

William came for a visit, too!  Once he got there, it was quite difficult to get a coherent answer out of either of them.  They were pretty wrapped up in chatting and figuring out how to battle each other using their phones.

It's always good seeing the two of them together. I know Chase was excited to see William, especially since it wasn't an entirely expected visit.

And Dr.Cooper has also stopped back by.  Oddly enough he asked US what the plan was.  "Um...,"I thought. "Aren't you supposed to tell US?"  Come to find out, Chase is being handled by the Radiology team at the moment.  As best as I can tell, although the "teams" do chat, depending on what's going on with each patient, he/she gets handed off until it's time to pass them back.  Kind of like a warped game of a way.  

In essence, what Dr.Cooper said is that since he's receiving radiation from his brain to the bottom of his spine, instead of more targeted on the large tumor, they won't be doing any chemotherapy immediately following the end of radiation.  I asked about the intrathecal chemo (directly into the spinal fluid) and it sounded like even that would need to wait due to the more comprehensive radiation.  I've heard that chemo directly following radiation can cause your blood counts to plummet, but I didn't think that they would have to hold off on the intrathecal chemo, too.  He did say that Chase would probably have another bone marrow aspiration and spinal tap within a few weeks after radiation, but beyond that it sounds like they're not making any plans for further treatment.

Let me preface what I'm going to say by stating that I DETEST chemo and what it does to Chase.  It's a vile, heinous chemical and I understand it's necessary and that it has worked in the past, but I STILL cannot stand it when he has to have it.   Given my feelings about chemo, I'm strangely at odds with him NOT having any chemo or at least there not being any plans for chemo.  Since we've been through this three times before, I'm kind of in that "fight" mode. Kill the cancer!!  Granted, I know that the radiation is also doing the same thing, but the thought of "wait and see" after his radiation just kind of grates on me a bit.  But that's on me :-)

Colleen, the head Aflac nurse has been discussing with Chase about when he might feel ready to go home.  He's getting stronger daily, but he is still in need of assistance and gets tired very easily.  His idea was Thursday, but after we were told that he would be moved off the Aflac floor since there are other patients who have a more critical need, he opted for Wednesday.  We've done the "move to a different room"thing on several occasions for one reason or another and it's no fun.  So, Wednesday it is!! I know Chase will be happy to be back home with his dog, Cooper and I'm looking forward to my own bed.  And now being that it's Thursday as I finish writing this - we are HOME!!

But I'm getting a little ahead of myself.  Wednesday morning, our last day, we woke to Rebecca as our nurse!!  And she even brought him a special cup, just like she used to! I had forgotten all about them. "Chase's Special Good Morning Cocktail".

Only this cocktail didn't contain Miralax like most of the past ones she usually had brought him.  It was just around 8 am when she came to his room, which is not an hour that Chase is well acquainted with these days, but he certainly woke up a bit once he realized it was her.  Enough to exchange a few quips with her. It was a great way to start our last day there.

If you're new to Chase's blog, Rebecca has been his primary nurse since April 2009, just over 5 years so the two of them go a LONG way back.  She's been one of the few people who has always been able to get (harass, cajole, coerce) him into doing what he needs to do.   Yep, she's got a gift.

While we waiting on his 2:15 radiation appointment I got the car packed with all of our things, which I attempted to keep to a minimum.  He was also prescribed a bath chair and a wheelchair since he still requires a lot of assistance and doesn't have much energy.  I drive a Corolla and thought my trunk and back seat would have plenty of room for everything....barely.  I had my trunk all neatly packed when I realized the wheelchair was going to need to go back there. UGH! That wheelchair might collapse and unfold rather easily, but it's heavier than it looks and my trunk isn't all that high off the ground.

But now we're both home and we're going to enjoy it!  I'll keep posting on his progress and anything else we learn long the way. Thank you for the continued prayers! They've been uplifting!!

God Bless!!