Radiation Ends Early

Rudy's lab work today showed his platelets were down even lower.  The radiologist said we could still continue radiation, but when he realized we were set to start immunotherapy next week, he decided to stop radiation now.  It's already done what we wanted - cut the back pain.  Rudy only had 3 days left anyway.  Radiation is rough on platelets so having the extra days for his body to heal will help.  

Dr. Hyde said immunotherapy is "the best thing since sliced bread"
and is more important for Rudy than having more radiation.

At CTCA, when a patient finishes chemo or radiation, they have a little celebration.  When the patient comes out they ring a bell.

Rudy was a little surprised at how much he enjoyed the celebration.

They gave him a t-shirt, a cupcake and a few other little goodies. 

We thought our celebration was set for Friday, so we were totally unprepared. Rudy and I were dressed like slobs.  Linda and Nancy just happened to be there. They come for all the doctor appointments, but usually, it's just Rudy and I for radiation.  A bunch of CTCA folks who happened to be nearby joined in.  

One of the ladies who joined in the celebration was a housekeeping lady that we have all fallen in love with.  This lady is truly a ray of sunshine to everyone she meets.

This is the radiation receptionist who has greeted us most days for the past month.  This is a terrible photo of her - she's cute as a button.  

Once home, we were both exhausted.  Neither of us have slept well the last couple of days.  I've had an attack of seasonal allergies.  I bought 24 hour Zyrtec yesterday and for 24 hours I was miserable.  I think it's out of my system now and I feel much better.  I was able to take a long nap and I feel like a new woman.  The allergies were easier than the Zyrtec side effects.

Rudy tried to take a nap, too, but wasn't so lucky.  His last radiation today triggered some hacking.  His 7 day Sancuso patch for nausea was ending and it takes a while for the new patch to kick in.  Bottom line - he's feeling yucky.  His pain is down though - he's trying out dropping down to 1 pill a day now.  It was 3 a day.

Around dinnertime, it got exciting.  We had quite a hail storm.  I sure hope there's no damage.   I took a photo of it, but the hail hardly showed up in the photos.  Most of it was around an inch in diameter.  They got a little larger for a short time.  I went to the porch and said, "Seriously, God?" and the hail stopped.  I'm not kidding.  I guess God knew I didn't have time to deal with insurance and replacing our roof again.

I'll be having a lot more conversations with God this week.  I really want Rudy's body to rebound so he'll be able to do well with immunotherapy.  If his platelets are not up, it may have to be postponed.  Even if it's not postponed, it just make sense that his body needs to be in good shape in order for his immune system to wage a war against those cancer cells.

Also, he needs to put on some weight. He's down to 172 pounds.  That just won't do.  His appetite it practically non-existent.  I'm not known for my cooking skills, but I'm doing the best I can to make things that will tempt him. I'm failing miserably.  If anyone has extras of something yummy that's not too rich or spicy, bring it on over!  Don't bring a whole casserole - just enough for one serving.  His taste buds are still way off from chemo and there are lots of things he used to love that taste terrible right now.  His current favorite food are fried eggs.  We haven't eaten fried eggs in years.  Gooey, rich casseroles - especially the kind with condensed soups - disgust him.  Once I find a food he likes, I run it into the ground because it's so hard to think of what to cook that might tempt him.  The dogs take care of our leftovers and they've never had it so good.

Speaking of pets, have I shown this photo already?  I can't remember.  Little George looks so sweet as he sleeps snuggling up to Sadie.

Here's another pet photo.  It's a bit dark, but that's Sissy sitting in Shirley's cow chair.  I put a big pillow in the chair hoping to keep it pet-hair-free for company.  Sissy pushed that pillow back and claimed her spot.  I guess I'm going to need to make a slipcover soon.

I know there will be lots of people praying along with us these next weeks. Prayers have helped us through so many hard times.  We are praying hard that immunotherapy will prove wildly successful for Rudy and for all the other patients who are fighting.

One day, 

maybe the word incurable 

will only be used in history books.

I liked that sentence so well that I decided it needed to be large and bold!  

Good Days!

Rudy has had two very good days and we are hoping they will continue for a while.  Today is looking like it's going to be extra nice as well.  We are not taking these good days for granted.

Rudy had to get back on pain meds a few days ago.  We have quite a collection of tried and failed meds.  He has hated all of them because taking them means he can't drive his hotrod.  Beyond that, most of them have had awful side effects and didn't completely control the pain.  Luckily CTCA kept working to find a solution.

After a focused visit with our pain management doctor, Dr. Boomsaad, Rudy is on a program that is working great.  It's a three pill combo - a once a day pill for inflammation, a 3x a day pain med, and another pill for break-through pain (which he is thankfully not needing at all).  He also has a cream that he rubs on specific areas.  The cream helps pain, inflammation and chemo-related neuropathy, which we hope he doesn't get.

The pain med name is familiar and scary because you hear it on the news, but it's the lowest possible dose - nothing close to what people might look for on the black market.  A drug dealer would scoff at such a paltry dose.  Rudy's pain is totally under control.  He is not loopy at all.  At most, I'd say he's a little more mellow than usual, but that could also be from the joy of no pain.  Like most pain meds, it can cause some constipation, but we have that under control.  Many of his favorite foods are famous for keeping things moving. :-D

He started by taking the inflammation pill and the cream.  Those seemed to give a good bit of relief, and he hoped to use only them, but it didn't quite do the trick.  He was extremely reluctant to start the main one - the 3x a day pain med.  That's understandable knowing the crazy reactions he's had to a number of prescriptions.  He avoided it until it was obvious he had to get some relief.  First, he went for a long ride in his Challenger, then he came home and popped the pill.  He's so glad he did.  He is feeling like he has a life again (in between naps).

Hopefully, the pain meds won't be necessary for long.  This week, he'll begin the targeted radiation on his chest while continuing the targeted radiation on his pelvic area.  He'll have two back to back radiation treatments every day.  The pelvic radiation will be over early next week.

Rudy is super skinny right now - he had dropped down to 170.  His appetite is back and Operation Pack on the Pounds Before the Next Chemo is underway.  Lots of comfort foods are being consumed and nutritious choices are included as much as possible.  At this point, we are just focusing on what makes him want to eat more.  I don't think anyone would brag about our choices... except for those who have been there done that.  One of his recent favorites was chicken and dumplin's made by Trish.  He said it was perfect - not too rich, not too salty - just right.  One of Rudy's chemo taste changes has to do with foods that are too rich.  Trish also made a sweet potato pie and that was fantastic as well.  I'll bet he's up to at least 175 now!  Maybe even more.

3-15-2015, 8 PM Update - he weighed 179 this evening!

Yesterday, we had a bunch of company.  First, our niece, Kelly and her daughter Eiligh, came down from S.Carolina.  The Johnson siblings - Mike, Beverly, Wanda Kay, and Carrie - spent the afternoon with us.  Rudy group up with them and even though we don't see them often, it's as if no time has passed at all.  It was SUCH a fun day.   Rudy did great through the whole day and completely enjoyed himself.  He was pooped yesterday evening, but it was soooo worth it.

Friends and family have been doing so much to keep our spirits up.  We've gotten wonderful gifts and food and calls and cards and fun newspaper clippings and more.   (Thanks Susan, Carly, Shirley, Pam, Lou and Jeff, Diane, Denise W, and I know I'm forgetting somebody).

Oh  and Denise L and Daniel got Rudy a wonderful package that allows Rudy to watch Braves spring training games on his computer!  Did I mention that already?  It's working great and now that Rudy  FINALLY has a bit of energy, he can actually enjoy it.  Last week, he was too tired to even watch TV.

Phil Niekro signed the 1985 Fanbook that includes a photo of Ricky, Dale and Rudy at a game.
Check out those stylish mustaches!

Also, our niece, Denise, sent us the originals of the Phil Niekro autograph and photo.  Now that we are having a little bit of company, we're finally able to show that off.

It's wonderful to enjoy the magic of ordinary days - that's my current favorite phrase (from a movie title).  It's beautiful outside today.  I hope you can enjoy it as much as we are!

Radiation Begins

Rudy began radiation yesterday.  It turns out, he'll have two 14 day sessions.  They'll be weekdays only.  The first session targets two areas in the lower back / pelvic region.  The second session will target his chest / back.  Today, he had the second treatment in the first session.  It took only about 10 minutes.

Yesterday was his first treatment and it took longer.  They let Nancy and I go back with him as they set up.  They took time to explain how things work.

The above photo shows the radiation machine.  There may be a proper medical name for it, but I don't know it.

Once Rudy lays down in the mold made just for him, they line up all the marks on Rudy in the laser crosshairs.  The photo above is not lined up yet, but it's close.   Then they adjust specifically to target the areas they've chosen to go after.

The entire machine rotates.

Information they need is shown on large screens.  Also, they can see and hear Rudy from their room, safely away from the radiation.  The door into the radiation room is super thick - about 10 inches I'd guess.

They do what they can to make the area cheerful.  There are elaborate murals and fun music is playing the whole time.  The funny thing is, it's music you want to tap your toes to, but once situated for radiation, you aren't supposed to move a muscle.

Rudy's two nurse / technicians were cute as could be.  I wish I'd gotten photos of them both.

The radiation treatments haven't hurt and he doesn't seem to be having any issues from it that he can tell.  This is however, the worst day of his chemo cycle.  Tomorrow likely won't be much better. Today, he has been so tired that taking a shower was a major ordeal.  Nancy made him a casserole with cornbread.  Susan baked him muffins.  He hasn't had either yet.  When we got home from radiation, he sat in a chair for a few minutes without even turning on the TV.  Then he gave up and went to bed.  He's still asleep.

He's been having side effects from the pain meds.  He's incredibly groggy on them.  They take his appetite away, which is not good since he's dropped 13 pounds from his recent vomiting episodes.  There more annoying side effects.  We both hope he doesn't have to stay on those long.  He's particularly eager to stop taking them so he can drive his hotrod again.

I sure hope all this pays off by knocking that cancer back down.  I also pray that the immunotherapy starts soon and turns out to be easier and more successful.

Radiation Starting This Week

Rudy, Linda and Nancy met with Dr. Herskovik, a doctor in the Radiation/Oncology department, Thursday and Friday.  I was at home while the floors were being installed.  I sure hated missing those meetings.

Nancy described Dr. Herskovik as similar to Einstein!  They all agreed he was smart and nice.  Linda said he did a great job of explaining everything.

I talked to Rudy, Linda and Nancy separately, trying to find out as much as I could about the meetings. At the first meeting, Dr. H made clear that chemo was the most important part of his treatment and that Dr. Thompson was in the lead.  He had consulted with her in all plans.  He did feel radiation would be helpful in two key locations.  One is in the lung near his esophagus.  The other is in the lower back.  He showed a scan on a large screen so they could see the exact locations.  All I know is lower back.

The second appointment was to map out the target areas.  They made a mold of Rudy's body, did a scan and made marks all over.  With radiation, they have to be very, very accurate.

Rudy will go for a total of 14 daily radiation treatments (weekdays only).  The treatments only take about 20 minutes each.

Swallowing Issues
A new issue has popped up in the last couple of days.  Rudy is having trouble swallowing pills.  They all seem to stick in his throat.  He takes LOTS of supplements - each is to help with a specific issue - mostly having to do with keeping his immune system in good shape.  This doesn't seem to be a one time issue.  It seems to be happening at every pill taking session.  I am hoping and praying this ends up being a non-issue.

Floors
The new floors are being finished up as I write this post.  They are very close to finishing.  It looks so much better.  I will never again consent to move into a house before the floors are complete.  Truthfully, though, it was less horrible than I anticipated and the guys who did the installation were super nice!!!

Don't judge - When this photo was taken, the install was still in progress.  A layer of dust is covering everything in the house.  Rooms are still not put together.  Even so, it's a HUGE improvement!  

In some places, like the kitchen, the floor looks much darker than I anticipated. It all depends on shadow and light.  The photo below shows the true color.  I chose the color by sweeping up the dirt and fur on our floor and sprinkling it over all the samples I brought home.  The dirt didn't show hardly at all on this floor.  That sample board must have had fairy dust on it.  Things are definitely showing up on the real floor.  Dog fur remains hidden pretty well, but grass clippings, sawdust, and wall patch dust show up quite well.  Mud, too.  Our knucklehead dog, Teddy, bulldozed in on Thursday after playing in the mud and his tracks weren't disguised a bit.  I swear, that dog is super lovable, but he's more trouble than all the others put together.

As soon as the installers are done, I need to scoot to the grocery store.  I haven't been able to do any shopping for ages.  Rudy's weight is up to 190 (yippee!), but if I don't get some food in the house, that won't last.

I'm beyond tired.  Lots of other words come to mind - worried, overwhelmed, unorganized, out-of-control.  I always thought the Serenity prayer was perfect, but I've modified it a bit.  I'm running on empty.

Rudy seems down.  I hope the chemo and radiation next week help.  I hope we can start on immunotherapy soon.