Ditto

Today, when the nurse asked Rudy how he was doing, he told her to just look at last week's chart and write "ditto".   The bloodwork shows the platelets are still horribly low - 13.  That's lower than last week.  The good news is, everything else having to do with the immune system seems to be trending back up.  The platelets are often the last to bounce back so maybe they'll look better next week.

Last Thursday was his worst day.  He felt bad and looked bad.  I was pretty concerned.  This weekend he improved, but he continued to run fevers.  They go up and down, mostly hovering between 99.5 and 100.5.  Terri said if it goes over 100.4 and stays there for more than an hour or so, to give them a call.  They would probably prescribe antibiotics or something like that.
 
His liver enzymes all look pretty good, so the hepatitis hasn't messed it up so far.

His sodium has been low, which may explain why Rudy has suddenly decided potato chips are the best thing ever.  He's never been one to eat chips very often, but now he's loving them.  I may have to make an emergency grocery store run tonight for chips and cinnamon rolls.  We can't run out of either of those.

I used to be able to hold my head up when checking out at the grocery store.  My cart was filled with healthy stuff.  These days my cart is filled with all sorts of junk. I might start shopping late at night and wearing a disguise.

Fill 'Er Up!!!

Today's lab results showed platelets at 16, hemoglobin at 7.8, white blood cells at 1.6, and red blood cells at 2.46.  Low, low, low.  His heart rate is high, too -127.  His heart is picking up the pace in an attempt to get platelets.

Bag 1 of 3

They sent him over to the infusion room to get his "tank" filled.  He got 3 units of blood.  That's a lot!  Each unit of blood takes about 2 hours to infuse.  We didn't get home til around 11pm.  It's been a long night.  He also got a B-12 shot, so maybe that will help his fatigue as well.

Chantrese (sp?) was one of his nurses in the infusion room tonight.  Rudy was very taken with her.  At one point, he had bent over because his back was hurting a bit from sitting and she noticed and came over and touched the back of his head.  He said she had the most gentle touch - like a mother's touch and a wonderful smile.  I wish I'd gotten her photo.

His liver is still testing fine except for EST or something like that.  Whatever it is, it is probably elevated because of medications, not the hepatitis.

We still don't have our appointment time with the hematologist.  That doctor's scheduler should be contacting us soon.

That's the main news of the day.  Here are some extra tidbits -

These are two of Rudy's favorite nurses in Dr. Thompson's office.  They are both soooo friendly and they always make a fuss over Rudy.

Marsha

Tracy

Since it was such a long day, I took a break and went for a walk down by the pond.  It's really nice and there's so much to look at. The pond has a pretty fountain. All sorts of  plants are growing. I recognized some of them - daisies, iris, daylilies and more.  It will put on a show for months.  There's a gazebo with rockers and benches.  There are two swans. They stayed very busy preening.  There was also a heron.  It stayed very still.  I watched and watched and finally figured out that it's fake.  Ha.

  

Last, but not least, this is our cat, Cindy Lou.  She's decided she prefers to stay indoors.  Our dog Teddy annoys her when she goes outside.  She looks like she could use a bit more exercise, doesn't she?

No Immunotherapy Today

Immunotherapy was supposed to have started last week.  It didn't because his platelets were too low - 23.  We went to CTCA again today, hoping to get started on this new treatment.  His platelets are still too low - 30.  That's a tiny bit better than last week, but still waaayyy below normal.  Normal is between 150 and 450.
His hemoglobin is also low, but just over the number that would mean a transfusion.

His white blood cell count is low - that means he's back to needing to avoid company and crowds again.

Terri feels confident that these numbers will come back up, just like they did last time.  We just have to wait on his body to recover from the chemo and radiation.   By they way, we sure do love Terri.  She's the nurse practitioner, which is just one notch under our main doctor.  She's the whole package - brilliant, kind, sweet, funny, and upbeat.  She calls Rudy, "Uncle Rudy".  He LOVES that!  She gives him a big, from-the-heart hug every time she sees us.

This is not a good photo of Terri.  It doesn't even come close to capturing her vivacious personality.  She's forever in our hearts.

Rudy's appetite isn't all that great, but it's not as bad as it has been.  He's eating. Not much of what he wants is healthy, but at this point, I'm just happy to see him eating anything at all.  He weighs 168 now.  So what is he eating?  He wants pizza and cinnamon rolls.  I would never have guessed he'd enjoy the pizza because he's not liking anything spicy.  I should know better than to try to make sense of any of this.  Just when I think I have ANYTHING figured out, something happens to let me know that I'll likely never figure out anything at all.

The one thing he is enjoying that is on his list of things he's encouraged to have - beet and apple juice.  It's a bit of trouble to make.  I thought we could take the easy way out and mix the bottled beet juice with bottled organic apple juice.  It tasted good to me.  Nope.  He prefers the fresh.  There'll be no shortcuts, I guess.

More Misc. News - 

This photo was on our nieces Facebook page.  Abby wore a Team Rudy bracelet when she ran a race recently.

Another niece, Sarah, made Rudy the most wonderful cupcakes last weekend.  I CANNOT believe that I forgot to take a photo of them.  They were so pretty and colorful, all decorated for Easter.  Sarah is getting so tall.  Sarah is a niece on my side of the family.  Abby is from Rudy's side.  Both of them are tall and look like models.  We have a lot of fabulous nieces and nephews.  Best of all, they are all really good people.  We are so proud of them all.

We had two wonderful visits this weekend.  First, our long time friend, Doyle came by.  It was so good to see him.  Doyle and Rudy have been friends since high school.

Next, Rudy's Aunt Jane stopped by. She lives in Buford, but had come down to Senoia with a friend, so of course she couldn't be this close without seeing us.

It was a wonderful day and really great to see everybody, but Rudy was pretty worn out afterwards.  Happy, but worn out.

Again, I wasn't thinking and didn't take any photos.

On the other hand, one day last week, I took a million photos of one of our kitties who was being particularly snuggly.  This is Sissy -

Sissy thinks she's a baby and likes to be held like one, too.  She's incredibly smart and very high maintenance.

As for me, I'm still going.  I can handle the big important things pretty well, but the stupid, little things are getting to me.  I feel like I'm drowning.  I haven't had a pity party in a while, but I think I'm heading for one.  I keep crying over totally ridiculous things.  Yesterday, it was a commercial.  Like I said, it's totally ridiculous.  I think I'm going to try hard to have a little fun the next couple of days (while force feeding Rudy nutritious foods).

By the way, if anyone wants to bring Rudy some tasty leftovers to eat, let me know!  I'm not having much luck getting him to eat my cooking.  Don't bring much - he may not eat it and I won't be able to eat it since I have to stay on a pretty strict diet to keep my IBS issues under control.  I wish I had a cook... and a housekeeper... and I might as well wish for a gardener and handyman, while I'm at it.

OH OH OH - speaking of handyman, I'm so proud of myself.  After we got the new floors, our washing machine decided to dance across the floor every time it was turned on.  I bought a couple of sets of anti-vibration pads to go under the washer and dryer.  The problem - Rudy is too weak to help.  If I had said anything to him, he would have insisted on helping, but he just shouldn't, so I kept quiet about it.  My dad would have gladly helped, but I didn't want him to pull anything.  Any of my brother-in-laws would have come down and helped, but they're all either really busy or have bad knees.  So what's a girl to do?  I figured out how to do it all by myself.  I hoisted that heavy washing machine up with hand trucks and while balancing the washer in the air by standing on the hand trucks just right, I used my free foot to slide each pad in place.  The pads work great.  The washer no longer dances across the floor.  I couldn't get them under the dryer.  There's not enough room to lift it with hand trucks.  I'll have to get help one of these days.  No rush.  The dryer doesn't dance and I can live with the uneven surface til help arrives.  Luckily the dryer isn't nearly as heavy as the washer.

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!  

Three Long Days

We are finished with our three long days of appointments at CTCA.  We're glad all that's over so we can get back to a more relaxing schedule.

Day 1 included the CT Scan.

Day 2 was the day I was most anxious about because we met with Rudy's lead doctor, Dr. Thompson.  I wrote a short post on Facebook about that yesterday while we were in the infusion room getting two bags of platelets.  Here's what I wrote in case you missed it -

Here's a fast update on today's appointments. The cancer has grown. That was not really a big surprise. We are stopping chemo and getting on immunotherapy. Nivolumab Is an immunotherapy drug that was just FDA approved 10 days ago. It has shown good results and CTCA is very familiar with it from participating in the trials.
Rudy will finish up radiation, work to get his platelets built up and start immunotherapy in early April. That's exactly what we were hoping for so that was our first smile. With immunotherapy, almost all supplements were taken off the list. Only two remain. That was our second smile. Rudy is so tired of pills.When activity was discussed, Anya, the naturopath, made it perfectly clear that if he felt like cutting grass, he certainly could. He can do most anything he feels like doing. That was our third smile.
Rudy's platelets are low so he's getting a transfusion. That should help his energy a little. As for the hack attacks and mucus, there's not a lot to be done, but pineapple and papaya both contain an enzyme that helps. Seltzer water or sparkling water can also help. We can also add the sparkling water to the Ensure drinks he likes best. That should make them a little less syrupy.

We didn't get home last night til after 9pm.  We were wiped out.  Even so, I was relieved.  Dr. Thompson is wonderful.  I can't figure it out exactly, but she has a calming presence when she enters the room and you just feel cared for.

Today, we headed back out for a full day, but nothing as long as yesterday.  We met with 3 doctors today.

The first was Dr. Hyde, a radiologist.  The most interesting thing from that appointment was the news that radiation helps immunotherapy.  The radiation makes it easier for your immune system to target the cancer cells.

The next meeting was with the pulmonary doctor, Dr Parks.  He showed us Rudy's lung scan and explained it bit by bit.  He also gave Rudy an inhaler that will work on the mucus issue.  He's taken his first dose and so far is liking the change.

The third doctor was Dr. Boomsaad, the pain management doctor.  He told Rudy how to wean off the pain meds when he's ready.   We hope he can do that soon.  The doctor thought Rudy might want to wait til after radiation was over, but he's leaving it up to Rudy.  And of course, if he starts weaning off and finds he still needs it, he can just go back to 3x a day.    It's the lowest dose possible, but it's still pretty mood altering.  It definitely eliminates the pain, but at times, it makes Rudy agitated, irritable, and unable unwilling to censor his displeasure.  Thankfully, it's not all the time.  He's been happy as can be for the last couple of hours.  Earlier today, especially while talking to the pain department nurse, he "demonstrated" exactly how easily he could become agitated.  It wasn't all that bad, but when she writes her notes on that meeting, I'm sure exclamation marks will be included.  :-D   Warning: If you happen to call while he's still on that medication, don't take it personally if he acts up.

I've been wearing my hat like this alot.

Things can change on a dime, so I'm reluctant to say this, but...  tonight he seems to be feeling good.  He's very tired - he didn't sleep much at all last night, but still he's perky and relaxed and improved.  Must be those platelets he got yesterday!

Back to CTCA

Early this morning, we went back over to CTCA.  Rudy wasn't throwing up as often, but was still nauseous and feeling like he might throw up at any moment.  Also, his stomach was hurting from the last few days of being sick. He looked pretty bad.

Today, we had a wonderful doctor who took things a little further.  Fluids for dehydration and Zofran for anti-nausea are what most start with.  What comes after those two varies.  Dr. Blake gave Rudy several things that addressed the torn up stomach.

Dr. Blake is a professor at Morehouse.  He must be one heck of a professor.  He explained the stomach issues better than anyone I've ever heard.  Best of all, he gave Rudy meds that, so far, have helped more than anything anyone has done for him during these bouts with nausea.

Two different times,  we mentioned how much we liked Dr. Blake.  Both times, with two different nurses, they lit up and agreed and then remarked with great expression that he was also incredibly smart.  He's the best kind of smart.  He can explain things in simple terms and we could tell that he truly cared.

Dr. Blake was very attentive, too.  We saw him so many times that I completely lost count.  He checked on Rudy often and discussed every single action taken.

One more surprising thing -   Rudy had lab work done both Saturday and again today.  The platelets were up in the 40's on Saturday and they were 68 today.  Hurrah!  Despite being sick, his blood is recovering!

I sure hope that's all the excitement we'll have for this week.  Rudy is sound asleep right now and I think I'm going to crash soon myself.  I'm so tired that I feel a bit goofy.  If there are typos and errors throughout this post, I hope you'll pardon me.  :-D

PS - Linda and Nancy were with us most of today.  They come to as many meetings as they can.  Today, they also picked up prescriptions and made a stop by the grocery store to pick up a few things that Rudy will be able to handle once he's ready for solid foods.  I'll never be able to thank them enough for all they have done.  ♥

Platelets & Dog Bites

We were both really tired today.  Yesterday, we left the house at around 8:15am and got home at 9:38pm.  We love CTCA, but we sure don't like staying that long.

Rudy went back to CTCA today to check his blood levels.  His platelets were at 36 - still very low, but better than yesterday.  He'll go back on Monday to be sure they are trending upward.  He looks better and feels better.  I hope he'll reax over the weekend and give himself time to recover.

The big excitement today concerns me.  Teddy, the dog who has been dealing with mange, has been on steroids.  They have made him really hungry and I guess they have made him a bit more aggressive as well.  There was a dog scuffle last week around dinnertime.  We were able to break it up easily.  We switched to feeding them separately at dinnertime til today.  I decided to try feeding everyone together again.  That didn't go so well.  Teddy and Annie got into it and I broke the cardinal rule - I tried to break it up.  I got bit on the inside of my knee.  Boy, did it hurt!

I cleaned it real well.  It's bandaged and elevated.  I've taken acetaminophen.  It's swollen and bruised and ugly, but it definitely doesn't need stitches.  I'll watch it carefully for signs of infection.  All the dogs are up on their shots, so no worries there.  The pain has gone down, as long as I stay seated.

As for Teddy, no more steroids.  He was at the end of the dose anyway.  I'll be feeding him 3 times a day (away from all the others) til the steroids are well out of his system.  He has never shown any signs of aggression til these medications.
Annie was very contrite and has been wanting to make sure I'm not mad at her.  Teddy is a bit goofy.  I don't think he even realizes he bit me.

Truthfully, if I had it to do over again, I'd probably still try to break up that fight quickly.  When Rudy heard the commotion, he was on his way out.  If he'd gotten bit, he'd probably be at CTCA now, trying to stop the bleeding and fight the infection.  

Platelet Transfusion

We're at CTCA in the infusion room.   Rudy is getting blood and platelets.

 Since Rudy couldn't sleep last night and today's infusion may be long, they put him in one of the rooms with a bed.  He said it's pretty comfy.  His nurse, Diane, is really nice.

 He started having a nosebleed yesterday.  It started mild and then changed to a constant drip.  As of now it has stopped and he hasn't even gotten any platelets yet.

 Today's blood test showed that his white and red blood cells were already improving.  Platelets are usually the last to recover, but they will probably be up soon.

 A platelet transfusion doesn't last long.  Maybe even as little as 12 hours.  So the transfusion is just a little jumpstart maybe.  He'll be retested tomorrow to make sure his own platelets are climbing back up.  They're hoping to do chemo next Thursday.

Now he's asleep.  ❤️

8pm Update:
Still hanging out at ctca. It's been a very long day. Each bag has taken about 3 hours. My iPad doesn't have much power left.

Things just got lively around here. A patient completed her last chemo and they started ringing bells and singing and dancing. I swear, so many people dealing with cancer know how to make the most of life. That goes for the patients, the caretakers, and definitely the staff at ctca.

Mini Update

Not much to report today.  CTCA called.  They want Rudy to come back tomorrow and get his blood work done again.

We're glad.  Rudy is really tired and when he blows his nose there's some bleeding.  He feels sure he's going to end up getting platelets tomorrow.

He should have been resting today, but he set up appointments to have our propane tanks refilled and our water heater serviced.  Then, the water heater people did some work to the pond well.   He ended up spending way too much time on his feet, which is definitely not what he should be doing right now.

Platelets - More Drama

We had a mixed day.  The platelet saga continued, but we found out some good news concerning insurance and disability.

Rudy had a morning lab test to make sure his platelets were improving.  They weren't.  They were worse.  Rudy was already home when they got the results.  They called and told him to go right back over to be checked.

He was sent to their Quality of Life department, which is basically an onsite urgent care.  They checked him from head to toe with a notable detour in the end zone.  Rudy has been making jokes all evening about how two women got personal with him today.  That man can find humor in the most unlikely places!

As for the platelets, this drama is getting old.  His numbers are at 12.  If they go to 10, he'll be sent to the infusion room for platelets. We thought we were going there today.  In fact, they got his port all ready for it, when the change was made. The magic number for Dr. Thompson is 10 .  I'm not sure when they'll want to retest him, but I'd be willing to bet they'll call us tomorrow.  Dr. Thompson's team is monitoring Rudy very carefully.

We spent time on 4 different floors at CTCA today.  Rudy's doctor (and the whole lung unit) just moved to new offices on the 4th floor.  We went to Quality of Life on the 2nd floor, only to find they'd been moved to the 3rd floor.  And of course, most everything else is on the 1st floor.  The lung unit has it's own wing.  When we first went up, we found out the main elevator was not the one to use to get to the new lung unit.  However, it was really great that we took the wrong one.  It opened right in front of the office of a lady I have been trying to find time to speak with - Bridget, the insurance / finance person.

I have seen comments online about CTCA not accepting Medicare. I now suspect those comments are by people who either are misinformed or worse, have less than honest motives.   But I wanted to talk to someone who would truly know.  Rudy has been looking into getting on disability but the thought of possibly ending up with an insurance CTCA wouldn't accept scared the heck out of us.  Bridget assured us that's not the case.  They work with Medicare all the time - many of their patients are on it.  She gave us more info as well, but the bottom line, he can apply for disability without worrying.  It's a good thing.  Now that we are so happy at CTCA, they'd have a hard time getting us to leave!

We're newbies to this Social Security & disability stuff.   Rudy rushed closing his company when he got his cancer diagnosis.  He's about to turn 62, which makes him eligible for early retirement.  We just figured he'd get a little less each month and we'd deal with it.  With disability, he'll get the amount he would be eligible for if he'd retired at full retirement age.  It's enough of an increase to make us very happy with this news.

It feels odd to share all that.  I still have the old school "do not discuss finances publicly" ingrained in me.  However, I hate seeing misinformation circulating.  My little blog won't be seen by that many, but maybe someone will find this information helpful.

That's all for today.  Prayers please!  We'd love to see Rudy make some good grades on his next blood test.

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.