Thursday, January 29, 2015

Low Blood Counts... Again

Rudy didn't pass today's blood test.  White blood cells, absolute neutrophil count, platelets...  all low, not horribly low, but low enough to stop chemo.  He's anemic, which explains why he's been so chilly lately. He couldn't have his chemo and he's quarantined again.  Darnit.  He was just starting to go places and see people again.  But everything else looks good.

The Lab Technician
Looked Suspicious

We met with the nutritionist (Maureen) and naturopath (Anya) and advanced practitioner (Terri).  All of them had advice for things to do to try to encourage better counts.  Anya tweaked his supplements and one thing she added is a maitake mushroom tincture.  Rudy doesn't like mushrooms, but he's sure getting plenty of them through his supplements right now.

He'll be re-tested next week and will hopefully be able to have chemo towards the end of next week.  

Low blood counts are one of the common side effects of chemo.  Chemo targets all rapidly producing cells.  There are other cells in your body that reproduce rapidly besides cancer - like hair, gastro, and bone marrow.  The chemo is really going after Rudy's bone marrow and that's messing with his blood counts.

Chemo is not a one size fits all.  They start at a point that is fine for about 50% of patients and then they make adjustments as needed.  Rudy's chemo has been tweaked and it will still be tweaked more as needed.

The also are taking a look at his blood to see if he's a candidate for Tarceva.  It's a targeted therapy and is low on side effects.  We haven't heard about that one, but if Rudy is a good fit for it, I'm sure we'll find out.

Again, we are always amazed at how happy we are at CTCA.  Everyone is so nice and so HAPPY.  Maureen and Anya were cracking us up today.  Maureen calls Rudy "Uncle Rudy".  Terri is wonderful, too - a happy bundle of energy.  Don't get me wrong.  It's not all fun and games with Dr. Thompson's team.  They are ALL smart as can be and they take what they do very seriously.  They're hard working, but they know how to keep it light and make the patients feel good.  We feel so attached to them all.  They're great huggers and as Rudy says, those hugs are all genuine.

I used to see the commercials on TV about CTCA and think they were probably a bit puffed up.  Now, I think the commercials don't do them justice.  CTCA is the most amazing place.

Tuesday, January 27, 2015

Would you like a TEAM RUDY Bracelet?

For anyone who still doesn't have a TEAM RUDY bracelet, there are several easy ways to get one.


First, if you are anywhere near Sharpsburg and Peachtree City, you can stop by Collectors Corner and pick one up.

They have a basket full of them in The Redneck Designers Booth (on the first floor near the side register).  Collector's Corner is the big vintage/antique store on the corner where 34 and 54 meet.  It's right across from the new theater.  While you're there, be sure to look around.  If you haven't been there in awhile, you'll be amazed by the changes.  


OR - If you see me (Denise) or Linda (Rudy's sister) or Shirley (extraordinary friend), you can get one from us.  We all have extras.


Redneck Designers Booth

OR - You can message Shirley thru her Facebook page - Redneck Designers.  She will mail you one or however many you need.  Shirley is the one who came up with the bracelet idea.  She isn't accepting any money for doing this - not even for mailing them out.  But she has a booth at Collector's Corner and you could always spend some time in there and see if there's anything you'd like.  She can't stop you from making a purchase!  :-D


If you get a bracelet, 
we'd love it if you would post a photo of you wearing it 
to the Rudy and Denise Facebook page.  
You can see other photos that have been sent in here.

Saturday, January 24, 2015

What To Say

I have heard from a number of people who are worried about calling. They are worried they'll disturb us.

When Rudy first started chemo, that worried me, too, and I was overly protective, but we've settled into this life and keeping in touch with friends and family is more important than keeping the house quiet.

Go Ahead and Call! 
If it's not a good time, we'll be honest and tell you to call back later.

Another worry is the fear of talking with someone who is sick. I understand that one. It's hard to know what to say. You feel you need to keep a somber respectful tone and you don't want to say anything inappropriate. Don't worry. If you know Rudy, you know that he's a jokester. Cancer has not taken that away. He's still having as much fun as he can with the energy he has. We laugh lots! This is an odd time, but believe it or not, we're pretty happy.

If you get stuck and don't know what to talk about, here are some suggestions 

  • Mention his new car - The Challenger. He could go on and on about it. 
  • Ask him about Cancer Treatment Center. We LOVE that place. 
  • Ask him about his visits to the chiropractor and acupuncturist and massage therapist. Wow! They are really making a difference. I refer to those as his SPA visits.
  • Ask him about his vitamin regimen and the new things he does to stay healthy, like juicing beets.
  • Ask him how the dogs are doing.  Teddy, one of the new ones had the mange.  We've never had a dog with mange.  It's been a real experience.
  • But mostly, just talk about anything you want. If it's your first time talking to him and you get choked up, that's totally OK. If you laugh, that's wonderful. He'll just be happy to hear your voice. He's not getting out much, so those calls really mean alot.

Friday, January 23, 2015

Lymph Nodes are Garbage Disposals!

Today (Friday Jan 23) we met with Dr. Parks, the pulmonologist.  He discussed the scans a bit further.  He's the one who went over our original scans in such detail when we first came to CTCA.  We really like him.  He's a very serious, forthright, kind man.  Also, he wears the same size shoe as Rudy - a size 15.  Overall, Dr. Parks seemed at ease with the scan results.  

Dr. Parks explained a bit more about the lymph node activity and the lymphatic system in general.  

The lymph nodes are the body's garbage disposals.  They help the body get rid of junk.  When lymph glands show up on a scan as swollen, it doesn't necessarily mean it's bad.  There are some good reasons for them to be swollen as well.  Only a biopsy of the lymph node would tell if it's cancer, but there's no call to start biopsying lymph nodes on Rudy.  
Getting rid of the garbage!
We're hoping Rudy's swollen lymph nodes are just extra plump because they are working overtime disposing of cancer cells.  

We also talked with Dr. Parks a little about immunotherapy.  He explained that it's a fairly new therapy, but would probably end up being the preferred way to treat cancer.  

He said that Rudy would be an ideal candidate for it.  The treatment stimulates the patient's own immune system to fight the cancer.  Most patients whose cancers have progressed to Stage 4 and have undergone a number of chemos are in pretty bad shape and it's hard for their immune systems to put up much of a fight.  Rudy, however, is in great shape and this treatment could be even more promising for him.  

Rudy had his first visit with the chiro. today.  He came out smiling.  He'll be going back 3x a week for the next 2 weeks.  Honestly, between the chiropractor, the massage therapist, the acupuncturist, the nutritionist, the naturopath and all of the pampering he gets, you'd think he was at a spa.  I love that they are making him feel so great.  

Special note to Paige - Rudy said to tell Joe he really needs to take advantage of these extras.  They truly are working!!!!!  None are painful or even uncomfortable - you come out feeling better than when you walked in. 

If Thursday's chemo is anything like the others, tomorrow and  Sunday will be his super tired days. We'll probably lay low this weekend.  He's feeling pretty darned good today.  This chemo includes carboplatin which he's been taking every 3 weeks.  I'm assuming he had the full dose.  He also had a 1 week dose of Gemsar.  He goes back next week for another.  I don't think he'll have carboplatin for that one.  The only reason for mentioning this, is that since part of his chemo is different and it's a one week dose, we really aren't sure what his side effects will be.  

Will he feel gross with this new chemo combination?  Will he feel as tired as he did after the last one?  Will he ache?  Will his blood counts go down?  Who knows.  We are learning to live on the fly.  Planning anything while fighting cancer is an exercise in futility.   

Thursday, January 22, 2015

Pet Scan Results

Today's news was mixed.  The good news - there is less cancer overall.  The bad news - there is more activity in some of the lymph nodes.

His head and neck area looked good.  The lymph nodes in a couple of chains around the chest are the ones in trouble.  His main lesion has stopped growing.  The liver, spleen, gallbladder, abdomen and belly look good.  There was a little activity in a spot on his lower back and pelvis that will be watched closely.  There's still a little bone activity.

We're happy about the good news, but Dr. Thompson focused on what we need to do about those poor lymph nodes and anyplace showing "activity".  Activity is not a good thing when talking about cancer cells.

Rudy will be on a different chemo protocol for the next 6 weeks.  He'll continue carboplatin.  The abraxane is being dropped.  Gemzar will be used instead.  That starts today.

Gemzar will be easy to remember.  I just picture a czar named Jim in control of rubies, diamonds, and other precious gems.  Rudy's lymph nodes are the gems and our czar is going to go in there with his bodyguards and tell them all to settle down.

Gemzar's main side effect we'll keep an eye on is that it's a challenge to blood counts.  We'll be doing everything we can to help those numbers.  But, I guess we'll still have to be careful about exposure to germs, not getting cut or hurt and things like that.  Most chemo patients need to watch those things.  CTCA will monitor his numbers closely.

A while back, Rudy had a biopsy that was sent off to find the actual type of small cell cancer and to check for genetic mutations.  They did find a couple of mutations.  There are a number of possible Phase I clinical trials for cancers with similar mutations, but nothing for his specific mutation.  Dr. Thompson went over the possible trials, but since they weren't a perfect match, we're not going to jump into any of those at this point.

In 6 weeks, Rudy will have another scan.  This time it will be a CAT scan.  Not just any PET will do.   It has to be the CAT. (Ha Ha)

It's very possible that at that point, Rudy may change to immunotherapy.  This is a fairly new type of therapy that uses the body's immune system to fight cancer.  There are some hoops you have to jump thru to be able to have immunotherapy and Dr Thompson is doing a few things to work towards it so if we do make a change, there won't be much of a wait.

Wednesday, January 21, 2015

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.  

Tuesday, January 20, 2015

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!!!!!!!!!!!!!!

Wednesday, January 14, 2015

CTCA Appointments for January 14

We had a busy morning over at Cancer Treatment Centers of America.

That's Rudy's foot peeking out from behind the curtain.

The first appointment was to get Rudy's blood drawn.  They monitor his blood closely to make sure he's staying on track.  We got the results a short time later when we met with Terri.  She was beaming with good news.  The Absolute Neutrophil number is above normal.  This number is an important one in terms of  his immune system.  This number has been low on Rudy's lab reports for too long.  Boy, did it bounce back!  He still has a few things a little low or a little high, but nothing is far off. Terri said he's still a little bit anemic, but not enough to affect chemo. We'll be eating more iron this week.  Good news -  he can now see friends and family.  Terri said, "Just don't lick any sick people."  All joking aside, we'll still be careful, as advised for anyone undergoing chemo and, of course, we're still planning to be cautious while this flu makes the rounds.  HOWEVER, Rudy will at least be able to do a little something to help his severe case of Cabin Fever!

His kidney, liver, heart, and lungs still look good.  His blood pressure is great.

Rudy had two new appointments today that were GREAT.  First he had a massage that was so good he looked like he had turned to jelly when it was over.  I was with him and I felt pretty relaxed just from watching.  The lights were dimmed and soft music was playing.

He also had acupuncture for the first time ever.  This guy took a long time explaining just how it worked and figuring out what symptoms to target.  It didn't hurt, but there's no immediate results.  It will be interesting to see how these extras benefit over time.

One symptom both the acupuncturist and the massage therapist targeted was the tension in his neck.  Rudy had been dealing with some tension headaches.  They eased as soon as he got good news before the last chemo, but he had another one a day or so ago, possibly because he's getting a tiny bit anxious about the upcoming Pet Scan.  He also had a crazy cramp in his neck this week.  It was pretty much like a cramp you might get in a leg.  It lasted about 15 minutes and hurt like the devil.  Massaging it didn't help a bit.  It finally eased when I brought him a heating pad.  The massage therapist could still feel tight muscles in his neck and shoulders and she worked them good today.  And the acupuncturist worked on the pathways there as well.  He also talked with Rudy about some other options in the Mind/Body department at CTCA to help him with the cause of his tension - worrying.  Rudy puts up a good front, but anyone with a diagnosis like his is going to have stress to deal with.  As far as I'm concerned, I think he can use any help that's offered to help with that.  In fact, we could both benefit from some help.  It's really hard not to worry.

While we were waiting to see the acupuncturist, we saw a short film being made right in front of us.

The video is being made for CTCA employees, which they call stakeholders.  CTCA works very hard to encourage their stakeholders to wholeheartedly participate in their philosophy - the mother standard.  They want their employees to treat each patient just as well as they'd treat their mother or someone they dearly loved. (I can verify that they are very successful at this - their employees are amazing!) In this film, they were honoring two employees who went above and beyond.  Another employee saw these two doing something special for a patient and she nominated them both.  They were each being given a $500 reward as part of their recognition. By the way, they were recognized for what they had done to help a couple celebrate their anniversary.  The husband always gave his wife white roses on their anniversaries - one for each year they were married.  This anniversary was being spent in chemo and he was sad that they couldn't celebrate as they'd always done before.  These two employees helped him get the roses for his wife (19 of them) and also brought them a dvd player and movie.

Sometimes CTCA feels like a gathering place for friends.  Today, while we were working with Joe, our scheduler, we saw Paige.  I posted about her a few days ago.  Her husband was around the corner from our room, meeting with Dr. Thompson before his chemo.  Paige's son and daughter-in law (who works for DR. Thompson) stopped by, too.  Joe is lively and fun.  Stephanie and Paige are loads of fun. Paige's son was only there for a flash, but I'll bet he's fun, too. Joe and Stephanie are hard working and doing great things, but it feels more like play when we're with them.  If laughter is the best medicine, then we will get well fast.  NOte: There are 2 Joes in this story - Joe, our scheduler, and Paige's husband who is having chemo.

CHEMO THREE - Our observations
I haven't posted many updates this last week.  No new is good news.  Basically, Rudy said this was a very easy chemo.  He was really, really, REALLY tired for a day or two, but there was no nausea.  He is bouncing back pretty fast.  He is doing things around the house.  He rests a lot, but he's able to be more active than after the other chemos.

Next week, the big things are a Pet Scan and Chemo.  The Pet Scan will tell us whether the chemos have been successful or not.  We are hoping and praying that we're making progress.

If you are praying for us, we sure do appreciate it.  We know we are being looked after, even when our news isn't what we wanted.  We're thankful that things are going so well.   Please keep praying.  God willing, his Pet Scan results will be good.  We want that so badly!  Also, it would be wonderful if you would add Paige and her husband, Joe, to your prayer list.  Joe had to have part of his tongue removed due to mouth and throat cancer.  He has a feeding tube.  He has great difficulty swallowing.  If he gets nauseous, he could choke.  We hope this chemo goes as well for him as Rudy's chemos are going for him.  We also hope that he is able to have reconstructive surgery soon so he can swallow again and eat normally once more.

I'm sure I'm leaving something out, but this post is quite long enough.  Feel free to call this week.  Those phone calls keep Rudy cheered and frankly, he's probably really tired of talking to me so much lately! :-D

Tuesday, January 13, 2015

180 Degree Farm

Today was my grocery day.

My first stop was at CTCA because this is the day that 180 Degree Farm sets up their market table right in the main hallway.

Since it's mid-winter, they didn't have fresh produce, but they had lots of interesting foods. They had dried beans, cornmeal, quinoa, coconut, ginger and more - all organic!

When I asked the price, she said "FREE". They give the food away at CTCA, but people are welcome to give a donation. I certainly did.

They also sell at their Sharpsburg farm on Saturdays. There is a very interesting and compelling story behind this farm and of course, it's a cancer story with a happy ending. You can read it here.

Here's their Facebook page in case you'd like to keep up with when they start having produce ready.

Thursday, January 8, 2015

Meeting Paige... No Coincidence

I took our business tax files over to the accountants today and had a meant-to-be encounter.  I met Paige.  Her name will be easy for me to remember because, as it turns out, we are on the same "page" in life.


We had actually met briefly before, but had not talked enough to have connected.  This time, there was a definite connection.  We have so much in common.  She is working at the accountant's office now.  I worked there for a year or so after I retired from teaching.

Paige's husband, Joe, has cancer (throat and mouth) and he's at CTCA.  They started out with a group in Macon, where things did not go well (understatement).  They are much happier now.  That's no surprise.  All of the CTCA patients I've spoken to so far have been very grateful to be there.

Joe and Rudy are close to the same age and both of them are about to officially retire and get on social security.

Joe's CTCA oncologist is Dr. Thompson, same as Rudy's.  Paige's daughter-in-law is Stephanie, Rudy's main contact person at CTCA.  I never can remember her title, but she is just under Dr. Thompson.  A physician's assistant, I think, but they call it something else at CTCA..

Paige's mother had stage 4 breast cancer a few years ago, but is doing just fine now with no sign of cancer.  Does that sound familiar? It gets better.  Paige's mom's doctor was Dr. Bender, the same as Trish.  I wonder if we were both there at the same time for any of those treatments.

Paige and Joe have a lot of challenges.  They were living in Macon, but have moved in with her mom to be closer to CTCA.  Joe can't eat by mouth right now.  He has a feeding tube.  That will not always be the case.  Reconstructive surgery is planned for the future. Right now, Joe is having chemo treatments weekly.   Please add Paige and Joe to your prayers!

I'm not sure why Paige and I met.  I don't know if she'll help me or I'll help her or both, but I have a feeling we met for a reason.

Wednesday, January 7, 2015

Photos of CTCA

It occurred to me that I have hardly posted any photos of this place that has become our second home. It's really nice, but actually, it's the people and their philosophy that make it special. I took these photos a week or so ago and forgot to post them.

Sunday, January 4, 2015

SOOOO Tired!

The main side effect today - he is soooooooo tired.

He slept thru the night. He got up and sat in his chair for a bit, dozing off and on. Went back to bed. Slept hard another 3 or 4 hours. He's up now, but still very lethargic.

This side effect is "tiresome", but we'll gladly take it over throwing up. His appetite is non-existent and he took an anti-nausea pill a few minutes ago. He was feeling a bit off and we wanted to nip that in the bud. Hopefully, that won't worsen.

PS - Shirley, this pug's for you!

Round 3 - so far, so good

Chemo Round 3 - so far, so good!

The second day after chemo is typically when things go downhill. Rudy is doing just fine this morning and we hope he continues to be fine. The biggest relief - no nausea and he hasn't taken any anti-nausea meds. Chemo 1, where he threw up for 5 days straight, gave us a real fear of that side effect.

Friday, January 2, 2015

Chemo 3

Hurray! Thanks for all the prayers. They worked!!! Rudy's blood test results were FINALLY much better and he is having chemo. 2015 is off to a nice start. We're feeling happy and blessed.

I feel sure one reason Rudy's blood counts were better is that I was wearing my lucky socks.  My wonderful friend, Judy, knitted these for me several years ago.  She has actually knitted a bunch of socks for me over the years.  They are amazing.  Even though she uses wool, she knows a trick or two about which wools are best.  I typically can't put wool right next to my skin - it itches like crazy.  I've never ever had that reaction to Judy's socks.