Nervous as a CAT SCAN

I'm getting a little nervous about our appointments this week.  Rudy has a cat scan one day, then the next two days, he'll see four different doctors - his oncologist, his radiologist, his pulmonary doctor and his pain management doctor.  The most important meeting will be with his oncologist, Dr. Thompson.

Dr. Thompson will tell us what she thinks after seeing the results of the scan.  I'm praying for good news, but truthfully, I don't even know what exactly to hope for.  If his scan shows improvement, that's good, but it might keep him from going into the immunotherapy program. (I don't know that for sure.)  On the other hand, if the scan doesn't show improvement, then that means Rudy is getting worse.  I couldn't possibly wish for that, right?  But is that what we have to have in order to get into the immunotherapy program?  And don't even get me started about the worry of somehow missing out on that program altogether!  What if he can't get in?  What if it's closed?

With every big appointment we've had on this journey, I've tried to have an upbeat attitude.  I've worked hard to squash down fears and let positive thinking rule.  Almost every time, I've had the rug pulled out from under me.  My new strategy is avoidance.  I try not to think about it.  Nothing I think will change the outcome.  I haven't been able to anticipate most of the things that have happened.  It seems something crazy and unanticipated is always waiting around the corner.  I've come to terms with the fact that, in this situation, I have very little control. We're being swept off by a tidal wave and I have no idea where we'll end up.  By the way, I've referred to me through this paragraph because Rudy has acted incredibly strong.  If he's worried, he's doing a great job of hiding it.

We could really use lots of prayers.  Please pray for a good outcome, whatever that is.  We really could use some HAPPY!  I don't want us to come away from our appointments scared or disappointed, or worse, in shock.  We've had enough of all of that.

Now, I'll quit thinking about it and switch to happier topics.

Our sweet friends, Susan and Rick Holcombe gave us a bucket of fun!  Just look at all the fun things they packed in that bucket.  There's certainly plenty there to distract us!

Hack Hack Hack update - Claritin to the rescue.  Rudy's hacking and gurgling issues were way beyond acceptable. I used to have horrible allergies and many bad winters with bronchitis and I've never seen anything like this.   I have been particularly concerned about how he'd be able to get through the 3 long days of appointments this week.  We decided to try out the Claritin today.  He usually gets that around chemo time, so it should be just fine.  He only took it 3 or 4 hours ago, so I'm not ready to declare it a success, but he sure has improved so far!  Of course, we'll discuss it more with our doctor this week to see if that's the best thing to do.

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!

Insurance Induced Heart Attack

There's actually a number of things to talk about in this post.  I'll start with the most important news.  Rudy wasn't able to have chemo again today because of low platelets, but his numbers are continuing to climb.  Terri, explained everything to us and set our minds at ease.  She's great.  She has a way of presenting complicated information so that even those of us who retained nothing from biology class can understand.  Everything she said  made perfect sense while she was saying it, but there's no way I could re-explain any of it to someone else.

Rudy will try again for chemo Tuesday week.  That will give him PLENTY of time to recover.

He has been bummed about his numbers staying down.  He's bummed about having his chemo reduced - he would have thought he'd be one who could have it increased.  He has always been so strong and had an immune system that was amazing.  Terri assured Rudy that other than the cancer, he was in great shape (liver, kidneys, and heart are just great) and that most others whose chemo knocked them down with blood counts so low ended up in the hospital for a couple of weeks.

As for me, I was tired today because I was recovering from a heart attack thanks to an attention-getting statement from our insurance company.

We received an insurance statement for over $41,000 with insurance paying none and Rudy and I being responsible for paying the whole thing.  Claim denied.

Once I was able to breathe, I continued to read the claim and finally, in teeny-tiny font at the very end of the 3 page statement, found an explanation.  They needed to know if we had a secondary insurance company.  There was a form we needed to sign.  Of course they didn't enclose the form, but a call today, put the whole thing back on track.  I should sleep better tonight.

We are still dealing with a few other insurance glitches.  They don't consider a PET scan necessary for someone with lung cancer. Luckily for us, CTCA is helping us.  They put my mind at ease where the PET scan is concerned.

One of our painted subfloors

The scary insurance claim came just after we had agreed to finally have a floor installed in our house.  When we first moved in our current house, we couldn't make up our mind on a floor.  With so many animals, we knew we'd be rough on a floor.  Plus our house is passive solar, which can cause bad fading to many floor types.  Wood floors, which we both love, would look terrible fast.  A tile floor was considered.  Eco friendly choices were considered - cork or bamboo or even real linoleum.  Still, we kept putting off making a decision because nothing seemed right.  After all the debating, we're getting a floor neither of us had considered til recently - a laminate wood-look floor.  It's surprisingly pretty.  The pattern and color is great.  It looks like wood, but is tough as nails.  It has a lifetime residential warranty and should hold up just fine. It's backed with cork, so maybe the house will stay a bit warmer in winter and maybe the noise around the house will be lessened.

For those who haven't been to our house and are curious how we managed with just sub-floors for this long, you might want to check out the flooring posts on my other blog.  I did faux paint treatments on our floors.  They were great for a few years, but we'll be very happy to have them covered up.  This is really bad timing and honestly, I'm terrified of spending this chunk of money right now, even though we've had it set aside for ages, but it needs to be done.  Now that the decision has been made, I'm going to stop worrying and pray that everything works out.  The way I see it, if we keep getting $41,000 bills, we'll have to sell the house and it'll sell better with a floor.

Rudy has been staying super cozy in his recliner thanks to the two wonderful blankets his Aunt Betty and Uncle Emory sent him.  Mmmm. They are so soft.

I wanted him to pose for a photo with the blanket.  After I snapped the above photo, I told Rudy he wasn't animated enough.  So this was his next pose -

That's all for now.  Nothing much is going on next week, so if I don't post for a bit, it's because there's nothing much to report.  Feel free to call.  Rudy would probably welcome the distraction.  He still can't get around people too much, but phone calls are really great.  Don't worry about waking him - if he's asleep, I'll catch the phone and let you know to call back.

Platelets &^%$#@!

Rudy is low on platelets.  Too low.  Platelets.  What a dumb name.  It sounds like he doesn't have enough salad plates.  His "dinner party" was canceled.  No chemo again this week.  We'll try again next week.  He's going back over tomorrow to check his blood again.  I hope he has more of those little plates on the table!

Low platelets need to be watched carefully.  They have to do with the ability for blood to clot.  If he gets a cut, he could have trouble stopping the bleeding.  The other key items on his blood test don't look too bad.  They seem to be improving.

Prayers please!
Rudy needs more platelets!

The lab test was at 8:30, then Rudy went to the spa area.  He had chiro and massage appointments set up.  By the time Rudy had finished seeing the chiropractor, Brooke, from Dr. Thompson's office, had tracked us down and wanted to discuss the low platelets.  The lab work is done in another department.   They post the tests quickly.  I can pull them up online.  They are available to everyone on Rudy's medical team.  The team didn't waste any time looking them over even though he wasn't slated to meet with them until Thursday.  He may have unsatisfactory platelets, but he has a really great medical team.

Rudy is bummed.  He doesn't understand why his blood work is not better.  He has always been so tough and strong.  He has always been a fast healer.  He doesn't understand why he keeps having so much trouble with chemo.   He seemed very bummed earlier, but his state of mind has now been downgraded to somewhere between mildly bummed and stir crazy from watching so much TV over the last few months.

His spa treatments were nice, as always.

The chiropractor doesn't crack bones these days.   There a little gun-like thingie the doctor held against Rudy and fired a bunch of pops.  Rudy said it doesn't hurt.  His neck has been a key spot being worked on and his range of motion has improved significantly.

He had a massage, today, too.  He comes out of this room looking like a wet noodle after these.

Stephanie, his massage therapist is very pretty.  This photo doesn't do her justice.  She's also incredibly nice.  Best of all, she gives a great massage. She spends extra time working those kinked neck muscles, too.  You can't tell from this photo but the lights are dimmed.  There's soft music playing in the background.  I find it hard to believe that some patients don't bother signing up for these extras.  They just don't know what they're missing.

Last, but not least, this week Nancy passed along a gift from Rudy's Aunt Jane.  Actually, the gift is from her sweet church group.  They made a cozy lap quilt for him.

 Every time they tied one of the quilt knots, they said a prayer for Rudy.  We were both so touched by this.

I almost forgot this little extra -

 Our sweet babies can be so darned cute.  This is little George snuggling up to big Sadie.  They are so similar in nature and George likes to hang out with her.

PHIL NIEKRO Joins Team Rudy!

Tonight “Team Rudy” went high class.  When Shirley first started the Team Rudy bracelets, I was blown away, but I had no idea how it would catch on and just where it would lead.  Tonight it led to a VIP who means a great deal to Rudy.

Jonce, PHIL NIEKRO, and Jack

My niece, Denise (don't get confused - there are 3 Denise's in our family - none named after the other) got this photo of PHIL NIEKRO wearing a TEAM RUDY bracelet!  Holy Cow!   

Denise's sons play baseball in the same league as Niekro's grandson. They all cross paths now and then.  Denise said Mr. Niekro was so nice that she almost cried.  He gave her an autograph, posed with the bracelet, passed along a very kind message for Rudy and then ASKED IF HE COULD KEEP THE BRACELET!  He's officially part of Team Rudy!   

Rudy was completely speechless when I told him, but once he was able to talk, he went into a major spiel about Niekro's impressive talent.  At least 5 minutes of that was dedicated to the famous knuckleball.  

Anyone who knows Rudy, knows that The Braves are very important to him and have been his whole life.  His entire family are major fans.  Baseball season is  serious stuff and it all centers on The Braves.  Phil Niekro is someone Rudy really admires both on and off the field.  As Rudy put it, Niekro's a class act. 

Denise messaged us a photo of the autograph. We'll get the original soon. The autograph is in a Braves program from ages ago (30+ years, I think).  Rudy's photo is on another page in the program along with 2 of his buddies - Ricky and Dale.  It's a closeup fan shot.  Denise got a copy of that program from Rudy's sister, Nancy.  

Tonight, when I think about all the things I'm thankful for, I'll be saying a special thank you prayer for Phil Niekro, my niece, Denise, and my friend Shirley.  Their extraordinary acts of kindness have all made Rudy very, very happy!

Bonus - Instead of spending time tonight wondering about Pet scan results, we'll be over the moon thinking about how Phil Niekro was actually thinking about Rudy tonight and is wearing one of his bracelets.  

Aloe Vera from Luis

Look what Luis and his family sent over for Rudy!

They are aloe vera leaves - the really big ones. I had been using one whole leaf at a time from my much smaller aloe plants (you can see one of my small plants in the photo below. I add the gel to our smoothies.

Luis said his grandmother often had him drink the gel when he was young. She's a big believer in using natural healing methods. (Me, too!)

There are all sorts of videos on YouTube showing easy ways to peel the leaves and extract the gel. Getting the gel out of the big leaves was much easier than with the small ones and one leaf has enough gel for quite a few smoothies.

We've used 4 sections already. It didn't change the taste at all, but it certainly improved the nutritional value of our smoothies!

THANKS LUIS!!!!!!!!!!!!!!

Looking for an Acupuncturist

My dear friend, Judy, gave us an amazing care package yesterday.  One of the things in it was the book, Welcome to the Cancer Club by Myles Beskind.  I have already finished it.  It was a really funny  take on the "joys" of cancer and included lots of tips for both the patient and caretaker.  The sub-title is Surviving... One Laugh at a Time :-).  

One tidbit I can't stop thinking about, probably because it's been on my mind lately, is about an acupuncturist.

The following excerpt is about the author's Uncle Joel, a three time cancer survivor, and concerns his experience with his third round -

When I was advised by my oncologist that I would have to go through 5 months of chemotherapy after my hospital stay for Non-Hodgkin's lymphoma, I was not happy but I agreed.  At the time I was going to an acupuncturist for something other than cancer.  She said that if I came to her while undergoing chemo, she would guarantee me no ill effects from the chemo (she did not promise to cure my cancer). At the end of 5 months, my oncologist sat me down for a final conference. 

He said that in all his years of treating cancer patients, especially Non-Hodgkin's lymphoma, he never had one that had zero side effects.  I then told him about my acupuncturist.  He looked at me and said, "She is full of shit!!!"... 

I paused for a moment and said, "That's funny, she said the same thing about you!"  (She never said that but I thought he deserved it) 

I got up and left him sitting alone... to ponder. 

Acupuncture increases the blood circulation in the body.  They feel that blood is the healer.  I cannot vouch for the theory but I know there is something to it.

I had been pondering finding an acupuncturist for Rudy's pain, but hadn't considered that it might help with chemo side effects.  Wow.

Cancer Treatment Centers of America has acupuncturist services, so after mid December, we could go there.  However, I'd really love to get Rudy started with one right away for his pain.  Maybe one could even help me with my IBS and/or sleep issues.

So now I'm looking for an acupuncturist who is not too far away - preferably in Coweta County or Fayette County, GA.  Does anyone know a good one?