Broccoli Salad

I'm having fun chopping anything I can find with my new  chef's chopping knife. Tonight I made a broccoli salad.

The recipe below is the one I've used for years, but tonight I used grade B real maple syrup instead of sugar and I sweetened less than called for.  It was still deee-lish!

It has a number of things that Rudy is supposed to eat right now - broccoli, walnuts and raisins are all on his list.

We sure hope his blood test on Friday looks good.  He's had to miss chemo 2 weeks in a row because of low counts.  :-(

I don't always do the "refrigerate overnight" bit.  It still tastes good.

Pity Party

People have told me many times lately that they really admire how strong I have been since finding out Rudy has lung cancer.  They think I'm so positive and focused.  First, that attitude has not come easily.  I feel like many times I am faking it for the benefit of others, mostly Rudy.  Some days I can't even fake it. Sunday was one of those days.  I had a big pity party and it pretty much lasted all day long.

I'm not going to be hard on myself for occasionally losing my grip.  I think my life is pretty damned challenging right now.  In addition to the big, ugly thing - cancer - so many little things keep popping up.  Every day, there is a new concern or something more on my to-do list.

• Rudy is closing his business.  I'm the bookkeeper. 
• The flu is rampant.  Rudy's immune system is down.  We need to avoid people.  Every time I come in from unavoidable errands, I strip down, throw everything I was wearing in the wash, and take a shower.
• Laundry piles have tripled.
• I am having to cook way more than previously. There is enormous pressure to make those meals extra nutritious.  His bloodwork numbers are pretty poor right now.  I juice beets and apples every day.  It's not difficult, but it takes time.
• With all the cooking comes lots of dish cleaning.  Lots.  Lots by hand (juicers and blenders).  Lots in the dishwasher.  
• I can't eat half of what I cook for Rudy because I have IBS.  I can't afford to skip out of my nutrition needs.  If I get sick, it could be disastrous.  But truthfully, I don't always have the energy to focus much on my meals.
• We have four cats and 6 dogs.  We are big animal lovers.  They generally bring lots of joys, but with all we have going on now, they feel overwhelming.  
• Two of our cats are old and blind.  Henry lives in the barn/workshop.  We tried to move him into the house so we wouldn't need to heat the barn.  That didn't work out.  He terrorized one of the other cats and he starting peeing all over.  We already have another peeing cat - Cindy Lou.  Her sight is fine and she stays outside most of the time.  When we bring her in (at night and in bad weather) she manages to sneak around and mark her territory - mostly on our baseboards.  Baseboards shouldn't be on the list of things to clean often, but at our house they are. I should be cleaning them right this minute.  I'm at my wits end.  We love Cindy.  She's cute as pie.  But there are times when we are ready to declare her a permanent outside cat, no matter what the weather.  Every time we decide that, the weather turns really really bad and we cave.
• A rescue puppy we got before the diagnosis has developed mange.  That requires lots of vet visits, special baths and medication 3x a day.  I'm taking him to the vet today for his special bath.  I still can't believe this has been added in our lives right now.  I've had a number of talks with God about it.  So far, there are no answers I can comprehend.
• Bills.  Home bills.  Company bills.   Especially medical bills.  Luckily we have good insurance.  It's not the money.  We are not knocking on the poorhouse door.  It's the time and energy.  Dealing with medical bills is an advanced skill.  You need to match the bill to the insurance statement.  Neither are easy to decipher.  Mistakes are made.  It's a huge headache.  
• I'm not free to clean whenever I have energy and time.  For instance, as I'm writing this post, Rudy is asleep in the recliner.  He needs his rest.  Rest is important for building platelets.  Several naps a day are good for him.  But I can't vacuum or bang around in the kitchen.  I have the energy.  I have the time.  But I need to be quiet.  So here I am on this darned computer.

I could go on and on and on.  If I had written this post on Sunday, that list would have been much longer.  Thankfully, my attitude is better now.  I've bounced back.  The pity party is over.  

When it comes to my to-do list, the thing that gets me through, and it has worked for me almost since the beginning of this cancer journey, is focusing on what I need to deal with today.  When I think of everything I need to juggle, I am overwhelmed and discouraged.  When I think of the future, I am overwhelmed, discouraged, and so sad that it's unbearable.  Even now, just writing that has made my eyes swell with tears.  BUT - when I think only of what I need to do today, it's really not so bad.  I need to spend time with Rudy.  That's the most important thing on the list.  I need to take Teddy to the vet.  I need to do some cooking and cleaning.  I've already got things in the crockpot and a load in the dishwasher.  I've also cooked pumpkin muffins (with pumpkin and raisins and walnuts - all on his list of things he needs.  The cats are fed.  Teddy has had his first dose of meds for the day.  It's not so bad.  I can do this.

I am sure that Sunday's pity party won't be my last.  Hopefully, I won't make them a habit.  They aren't helpful.  A day in pity is wasted a day.  

I have several reasons for writing this post.  Whenever someone compliments me on my strength and wonderful attitude, I feel like an imposter.  There are dark thoughts swirling thru my head that I constantly battle.  My positive attitude is a force of will.  I know there are others on the cancer journey who read my blog.  I don't want any of them for even a moment to think I'm always rosy and positive.  This is not easy.   I've never felt the need for a support group in my life, but I have been thinking seriously about joining one.  The only thing is I'm afraid if I really opened up, I might start crying and not be able to stop.  And I desperately need to hang on to being positive and happy.  That's what is called for right now.  

To stay positive, I only need to think of the good things in our life.  TRULY - Rudy and I have so much to be thankful for.    We love each other, even after all these years, and we are loved by many.  Our friend and family support group is amazing.  Our doctors and medical team at Cancer Treatment Center are phenomenal.  It's such a happy place and we are very lucky to be there.  We aren't rich by any means, but we have what we need to be happy.  We are blessed.  God is watching over us.

The pity party is over.

PS - Prayers please - We need Rudy's blood test results to be very very good this Friday.  

Low Numbers on Blood Test

PRAYERS PLEASE!!!! Rudy had his blood drawn again today to see if we were on the right track. The results were posted on his CTCA online page. Bummer.

Some of the numbers we were hoping would be going up were actually a little lower. Shoot. We're juicing beets and adding homemade bone broth to everything. Rudy is taking supplements 5x a day.

All of the worrisome numbers have to do with his immune system. If those numbers don't make some drastic improvements, he may have to skip his chemo again this Friday.

Or worse, he may get sick because his body wouldn't be able to fight off even the tiniest germ. Please pray that his immune system perks up fast!

Rudy is Calm and Happy - Yeah, Right!

Funny story...

Tonight I was talking on the phone to my sweet friend Janie. I was gushing and telling her how calm and happy Rudy is, thanks to influence of the wonderful people at CTCA. The way I'm talking about him, you'd think rays of sunshine are shooting out of him in all directions.

Just as I'm finishing up my glowing description, he comes running thru the house, chasing one of our cats who has just done something dreadful, and in a voice loud enough to be heard by anyone within a 10 mile radius, he's using all sorts of colorful language, none of which I would dare to write. He sounds like a crazy man.

Obviously, my tale of his total transformation was a little premature.

PS - His actions were totally against what CTCA recommended for boosting his immune system.

Biopsy and Port Procedure

Rudy had 2 procedures today. He had a port put in. A port is
is a small device that is implanted under the skin that can be used to draw blood and infuse chemotherapy drugs. The 2nd procedure was a biopsy to determine the exact sub-type of his lung cancer. This time, instead of going thru the back, they went down his throat. He has a bit of a sore throat and is running a slight fever - 99.9. If his fever goes to 100.4, we are supposed to call CTCA. --> PLEASE PRAY there are no complications!!!!!!!!

The surgery holding area is always rather chilly. Not only did CTCA provide warm blankets, but they also had a portable heater that blew warm air up under the covers. My first thought was that I wanted to get one of those! I looked it up and found a used one for a little under $500. I don't think I'll be getting one of those after all.

While we (Andy, Trish, Linda, Nancy and I) were waiting on Rudy to get out of surgery, we spent time in the cafeteria. Colin is working there part time during his school break. Colin is such a great kid - polite and personable. My cousin, Kelly, and her hubby Stewart should be really proud.

Happy Dance - No Nausea

We're doing the happy dance! Rudy is weak and tired, but he's still not nauseas!!!! The day's not over and I'm not ready to completely declare us out of the woods, but he was in pretty bad shape by this time after Round 1.

He was INCREDIBLY tired yesterday due mostly to the way-to-long day Thursday. He's just gotten up from a long nap and he looks relatively perky right now. Wahoo! Thank you, Dr. Thompson!!! Update: He's decided to go for a really short ride in his hotrod.

Chemo 2 - at CTCA

Rudy had his blood tested early yesterday morning and his doctor said everything looked great! We had a long, long, LONG wait, but finally started chemo mid-afternoon (Thursday, Dec 11th).

Each patient has their own chemo room with chairs and a TV and more. We were in Bay 24.

Rudy is smiling because he'd just discovered the infusion chair had buttons for heat and massage. He took advantage of both. The heat is especially good because patients often get chilly while being infused.

PLEASE ADD RUDY TO YOUR PRAYERS. We are really hoping he doesn't have the horrible reactions to this chemo that he did with the first.

Preventing Nausea in Chemo Round 2

Round 1 of chemo for Rudy was HORRIBLE!   He vomited for 4 days straight. Several things will be different about Chemo Round 2 and hopefully, the severe vomiting will be avoided.  That is the side effect that makes Rudy most nervous.

The first change - we are switching from Paclitaxel to Abraxane, which a a protein bound form of Paclitaxel.  This form is easier to "stomach".  The Abraxane will be taken in smaller doses every week, rather than a huge dose every 3rd week. That, too, may make it easier to tolerate.

Another difference is that Rudy is no longer on any pain medications.  Fentanyl was started the same day as Round 1 of chemo.  If it was a main culprit in the after-chemo vomiting, then we don't have to worry about that one on this round.

There will be some substantial anti-nausea meds given the day of chemo.  An anti-nausea med was used with Round 1 as well, but it didn't work against whatever thing Rudy was reacting to.  Since two things are being changed that could have been the cause of the nausea in the first place, hopefully, the anti nausea IV will not fail this time.

One other difference will be the medications used to treat any nausea that does occur.  When Rudy was having such a hard time after the first round, he was never seen by a doctor during any of the following days that we kept returning for fluids.  The nurses were left guessing and did the best they could.  They prescribed this and that and at one point he was taking 4 different nausea medications at one time and there were others previously tried still in his system. Two were oral, One was a patch.  Another was a cream.  We were told they each worked in different ways.  Their reasoning was that the combination would attack the nausea from many different angles.  That sounded good to us, so we followed instructions, desperate to do anything we could to help end the vomiting.

Dr. Thompson and her assistant, Stephanie, looked fairly incredulous about all of the meds he was taking for nausea.  They said that taking all of those together could have actually worked against him and prolonged the vomiting.  Hopefully, the preventative things being done will keep us from ever having to deal with uncontrolled vomiting again.

CTCA Day 3 The Plan

Our party card was full today!  Rudy, Linda, Nancy and I arrived before breakfast and got home just in time for supper.  We are sooooo tired.

We got so much information today that my head is spinning.

We started off in Pastoral Care.  The pastor was very, very nice.  We met with a couple of other medical folks who got more history and explained more of what was coming up.

Dr. Patricia Thompson

The meetings we had been most anticipating were in the afternoon.  We met the head of our team - Oncologist and Lung Specialist, Patricia Thompson.  We are in very capable hands.  She went over all sorts of things.

We'll do one more round of chemo similar to round 1, with a few adjustments to lessen the chance of nausea.  A number of other things will be done proactively to avoid nausea.  Hopefully, Round 2 won't leave Rudy sick as a dog for days.  AND, if there is a problem, CTCA is available to help 24/7.  Rudy can go over in the middle of the night if he needs to.  I sure hope that won't be necessary.  After round 2, she wants to rescan him to make sure this protocol is working.

Round 2 will most likely be on Thursday *IF* his white blood cell count has improved.  They are a bit low - probably from the number of days he was sick after Round 1.

There will be more things done in the next week.  He'll have a port put in.  He's getting another biopsy.  The first biopsy wasn't quite specific enough.  This time, they're going down his throat to get to the tumor.

Today, we were shown all of the recent blood test results and everything was explained in detail.  Then, 3 different doctors came up with plans to fix anything that was too high or too low.  Lots of the suggestions came from the naturopath and the nutritionist.  Rudy has some natural supplements to take and foods that will boost him back to better health.

Everyone we met with gave us typed summaries of all recommendations and things we discussed.  When a doctor meets with you at CTCA, they are usually accompanied by an assistant who is taking notes.  The notes are then printed out and you get a copy.  It's a good thing, because each doctor spends lots of time with you - usually 45 minutes to an hour.

There's more, but I'm just too tired to think.  Hopefully, I hit all the highlights in this post.  It was a very good day.   :-D

Sudden Hair Loss

Rudy's hair started falling out yesterday. By last night, a lot of it had gone.

There's a crazy strip of dark hair right down the back that is holding on for dear life. I told him it looks like a 3 year old tried to give him a mohawk. Rudy said he's glad I'm having fun at his expense, but he thinks it's funny, too. These days, we're getting our laughs wherever we can. :-D

Day 2 at CTCA

This morning was filled with more appointments at Cancer Treatment Center of America.  We are still in love.   I think it's an alternate universe and for some reason, the door into it has opened for us.

I knew we were lucky to get in, but I'm gaining a new appreciation of just how much of a miracle it is to be there.  I thought that only 40% of their patients could be from Georgia but we found out yesterday it's just 35%.  Also, I have heard a number of examples of people who wanted in, but couldn't because the quota had already been met. They should have kept trying.  We didn't make the November cut, but we made it in December.  We only had to wait a couple of weeks - just in time for Round 2.

Another reason we are blessed is that CTCA is right here in our backyard -  minutes from our house.  Most patients have to travel to get here.  CTCA makes it fairly easy for out of town patients. They set up all the travel arrangements and they pick patients up at the airport.  Still, those patients are away from home.  If Rudy had had to travel, I might have had a hard time talking him into giving it a try.  Anyone who knows him, knows that the man hates to leave home.  Knowing what we know now, I'd say it's DEFINITELY worth traveling.  Even Rudy would recommend it.

Another miracle is that the Newnan CTCA was built just in time for Rudy.  I know that's silly.  It's helping many other people - around 2000 at any given time, but it feels like it was built and made ready just for Rudy.  It was meant to be and we feel truly blessed.

My Current Favorite Quote

We met some wonderful patients today.  Cancer patients seem to have an incredible clarity about life and what's important. They almost have a different look about them.  A few of the patients we met today were young - in their 20's. Age didn't matter. They had that same clarity.  They were all kind and positive and patient. They move slower and not just because they are sick.  I really can't imagine anything more rewarding than working with these people.  I told Rudy that he, too, seemed to have that look.  He has changed.  I don't like the disease, but I like the new Rudy. We are closer than we've ever been.  Unexpectedly, we are really happy, too.

The doctors and nurses we saw today were top notch and very positive. CTCA really seems to attract the best staff.   The pulmonary specialist showed us our scan and took us thru it, bit by bit, explaining everything.  We had never seen the actual scans before.  Out in "the real world", they just don't show patients very much.

The Mind-Body doctor was very good and Rudy was really taken by lots of what the doctor had to say.  The Mind-Body specialist makes sure patients understand how being happy, even in the midst of a gloomy situation, can increase the odds of a good outcome.  CTCA has lots of tools and resources to help patients stay happy.  There's something for everyone.  Everyone at CTCA buys into this idea.  In fact, I'd say it's at the center of everything they do.  It's why everyone is so happy and nice.  They know how important it is for their patients.

When we were leaving the cafeteria today, Rudy went out slightly ahead of me.  He had to wait a minute and a nurse he'd never met saw him.  Rudy smiled at her and she walked over and gave him a big hug.  Rudy loved it.  He talked about it several times thru the evening.  That woman really moved him.  As we walked out, he said he had no doubt he was going to do well.  It only takes a moment to connect and have a profound effect on someone.  Why don't we all do that more often?

First Day at CTCA

We were supposed to go over to Cancer Treatment Center of America next week, but since Rudy is having so many drug interaction issues, we were able to have the appointment moved up.

Today (December 4th) was so full that I hardly know where to begin.  I guess I'll just go in chronological order.

We had our first appointment at Cancer Treatment Center of America.  Rudy and I got to CTCA early so we sat in the lobby and just took it in.  It's like a huge swanky hotel.  It was very busy - tons of people going here and there.  The wild thing - every single person we saw (patients and workers) was smiling.  I'm not exaggerating.  Ask Linda and Nancy.  It continued thru the day - every person we met was positive and happy and enthusiastic.  I really felt like we were in an alternate universe.

Rudy met with 5 people (or maybe more)  today and each one asked more questions than anyone we've met with so far.  They gathered lots of history - Rudy's history, his immediate family and extended family.  They were thorough.  

They were also organized.  OMG!  I have a DELUXE binder with everything I need to know and everything is organized with tabs and card holder pages and more.  If I want to look something up, I'll be able to find it easily.

Everyone we met said if we have questions, call them.  I have most everyone's number.  AND we can call over there 24/7.  If Rudy has trouble on a weekend, we won't be in a random emergency room being seen by someone who doesn't have access to his records.  Everything Rudy needs in regards to his health will be taken care of in this one facility.

We had a tour of the infusion room.  It's not one big room with all the patients.  There are large individual private rooms with TVs.  And Rudy can have guests.  They also have a nice porch so if someone gets tired of being cooped up inside, they can relax outside.

The whole facility felt more like a hotel than a medical facility.  

The cafeteria food was very good.  95-98% organic.  Much of it local grown.  http://www.180degreefarm.org/

This farm also sells produce at the hospital - market style - on Tuesdays.  This family has a child who was diagnosed with cancer at age 4 and they did a 180 degree change in their lifestyle and eating (hence the farm name).  Their child is now 12 and fine.  Apparently, the family really knows their stuff about fighting cancer with food and is very willing to share.

I am always a little nervous eating out.  I can't be sure what people have done to the foods that I may not be able to tolerate.  You'd think salads would be safe, but many places dip their lettuces in a solution to keep the leaves looking fresh longer.  Also, having dressing out is a big risk.  I took a gamble today and was just fine.  YAY!!!!!!!!!!!!!   Now, I won't have to pack my lunch on long days.    That'll be so nice.

I know I must be leaving stuff out.  The bottom line - we were all bowled over and feel like we're in very good hands.

Once home, we had something sad to deal with.  Our very old dog (17 or 18 years old), Lulu, had to be put down today.  She had a stroke overnight.  When we got up this morning, her feet were turning under and she was having a very hard time staying upright.   My sweet dad went with me to the vet. Lulu had been diagnosed with an aggressive form of leukemia and told she would likely only live another month or two.  That diagnosis was three years ago.  She lived a good long life, so we're trying to focus on that.

Late this afternoon, after Rudy took a nice nap, he wanted to go for a spin in his new Challenger.  I went along and boy, was that fun.  I've never been one to care much about cars as  long as they were safe and reliable, but I have to say, it was really fun riding around in this one.  Rudy made sure to test the power a few times.  It definitely has way more get-up-and-go than anyone would need.  I felt myself being thrown back in my seat on several occasions (and Rudy never broke the speed limit).   

So that was our day.  

We'll be back over at CTCA for more meetings tomorrow.

Rash and Medrol - Sick Again

Rudy has a rash on legs, arms, torso – This started Friday, Nov 28 or Saturday 29th.

By Monday, Dec 1st, the rash is getting worse.  Tried several creams, Benadryl, aloe vera, Eucerin, Aveeno bath...   Nothing is working. Other than rash, he’s feeling pretty good.  A little weak, but decent.

Tues, Dec 2 at 9:30 - 2 week appt with Anne (nurse at Dr Assikis).  She saw rash and prescribed steroids - Methylprednisolone Tablets (Medrol), 4mg dosepak.  He has a 5 day "dosepak" of the Medrol.   The first 2 days are 6 pills, the next 3 days are 3 pills each.  Also – OTC Pepcid AC and Claritin.  

Rudy took all of day 1 meds (as Anne instructed) starting around noon. Rudy felt good all day.  Was able to be a bit active all day – after dr appt, went to Target, Honey Baked ham.  Went home, took a nap, then went back out and picked up new car.  


Last night he could not sleep!   Had bad night sweats – 3 or 4 times.

This am he took the before breakfast dose and things went downhill pretty fast.  He's been throwing up all morning.  We've put the nausea ear patch back on and he's rubbed the nausea cream on his wrists.  He's trying to sip gatorade and forcing toast or crackers down.

Apparently nausea is a common side effect of Medrol.  So they give it to a man who is obviously prone to nausea?????  *&^%$#@!

I have contacted our "nurse navigator" at CTCA and they are trying to see if there's any way they can get him in sooner.  We're on standby.  There's a chance, they may even be able to see him tomorrow.

He felt sooooo good yesterday.  The rash was annoying, but he could deal with that.  Today, he said he feels about as bad as he did last week.

He was hoping to be riding around in his new car today.  :-(

TODAY - Wed, Dec 3

Woke up feeling pretty good, but very tired from restless night

Took the pre-breakfast dose of Medrol and it went downhill from there.  Episodes of vomiting – twice before 10:30am

10:20am - Put on Transderm ear patch and rubbed Prometh on wrists – both for nausea.

Vomited 2 more times before noon

4pm – tried to drink ginger ale.  Vomited again. He said he was tasting medicine.  We took the ear patch back off in case he was reacting to that.

5:30 – started coughing and vomited again

Took a shower and felt relief.  Got out and started feeling bad again.  Waiting a few minutes then got back in the shower.


Night sweats

CTCA Call + New Dodge Challenger

First - we got the call from CTCA today.  Our "nurse navigator" is a male and he's a former firefighter for Coweta County and PTC.  He was really nice and talked to Rudy and I for ages.  Rudy felt really good after the call was over.  We'll probably go over and take a tour sometime this week.

ALSO, Before Rudy was diagnosed, he ordered a new vehicle - a Dodge Challenger.   Guess what came today... He is beyond thrilled.    We just got home from picking it up.  He is sooooo happy!

Saturday Nov 29 Update

He's eating well.  Still weak but he looks so much better.

Rested mostly all morning but walked to the mailbox in the afternoon!!! Our mailbox is quite a trek!!!

Update - Nov 28

Still having diarrhea this morning.

He's so weak.  Took a shower, stayed mostly on shower seat. Said he wondered if he was going to be able to get up to dry himself off.

Appointment with Dr. Assikis   – 

Dr Assikis is astounded  that Rudy doesn't need pain meds after just one week. He said he wasn't hoping for that til week three or maybe two at best.

Dr. Assikis said Rudy is very sensitive to chemo - no surprise - and the next will be less strong. He'd rather see slower results with less upset to Rudy.

He had suggestions for getting his system back to normal.  The main issue right now is diarrhea.  He'll avoid dairy including ensure and no sweets. He'll eat breads rice and meat to bulk up.  His weight is now 178.  Ugh!

He said Rudy was doing great with drinking.  Since the diarrhea is still going on he wanted Rudy to go ahead and get more fluids today. Rudy is super weak today.  That's another reason dr A wanted to do fluids.

He'll be off pretty much all meds except on an as needed basis. One thing he wants him to stay on is the ear patch which is kind of like Dramamine.

Results came  back on the Cancer cells. There are no activating mutations. If there had been we could have attacked Cancer with pills rather than chemo.

He had 2 ham sandwiches today (lunch and dinner) and said they were the best he’d ever had.

Thanksgiving

Rudy had some diarrhea this morning but no vomiting all day.  Yeah!

Miracles never cease. Rudy slept a lot this morning and then we made a very quick visit to his sister's house where lots were gathered for Thanksgiving.

We didn't stay long, but it sure  meant alot for Rudy to be able to see his family.  He was weak and tired and didn't have the energy to join much in conversation.  People who hadn't seen him in awhile were probably worried by his appearance.  Those of us who had seen him over the last few days (Nancy, Linda and I) thought he looked so much better.

Rudy came home with a sampling of favorite family dishes. His tastes have changed thanks to chemo, but hopefully, he'll find some things that still taste right. He's only trying a little at a time. Linda's stuffing was the first thing he tried and so far it's his favorite.  The fruit mix still tastes good, too.

It's a good thing we didn't stay long. He crashed as soon as we got home. He's still too weak to do much.

More Fluids

Vomiting continues this morning.  Diarrhea, too.

Rudy is pumped full of fluids again - 3rd day in a row.

We still haven't seen a doctor - just nurses.  When we went in, we were hoping he'd be admitted to the hospital.  Surely, the over-the-top side effects are about over.

He was nauseous all day but is beginning to eat just a tad – things like jello.

We're really hopeful that tomorrow we won't need a trip to the ER for fluids and that we can stay home and sleep. That would be something to be truly thankful for!

We'll really miss spending the day with our family, but we know we'll see them all soon. Meanwhile, everyone have a fabulous Thanksgiving and take the time to truly appreciate how many wonderful people you have in your life.

Fluids day 2

Just after midnight another bout of vomiting.

It was time for a Zofran, but he said he didn't want to take it anymore because it made him sick

5am another bout of vomiting.  At what point does he get put in the hospital?

6:45am another bout of vomiting

Spent day in infusion room again,  More saline – 1 ½ bags.   Steroid.  Pepcid AC thru IV and two bags of Ativan, which made him talk absolute nonsense.  He thought he was installing glass in the infusion room.

He came home and slept and talked gibberish for a while.  Then he at a tiny bit of jello.  He vomited shortly after – around 6:30.  He sipped water a little while later then vomited again.

Today, some wondered if the vomiting was being caused by the Fentanyl 50mcg.  No one ever really did more than wonder because he put the patch on Friday around 1 and didn’t begin vomiting til early Sunday morning.  

I looked up Fentanyl and vomiting  this evening and from what I read, it’s a distinct possibility that’s what’s causing the major vomiting.  I called the after-hours number and Dr Menninberger said it would be fine to remove the patch and we’d soon know if that’s what was causing the vomiting.  I also wonder – the patch really took care of the pain, but was the 50 too strong to start off with?

Removed patch at 11pm

Vomited 11:20.  It'll take 12 or so hours for the Fentanyl to get out of his system.

Fluids Day 1

Rudy slept for a while overnight, but as soon as he got up around 4am, he felt nauseous. He took a nausea pill and soon after had a horrible bout of vomiting. We're going to get fluids this morning. I'm hoping they will give him anti-nausea stuff thru the IV as well. He feels terrible.

4:45am - He's still getting sick and now having diarrhea as well. He feels terrible.  Said he feels like he’s running a fever but doesn't want a thermometer in his mouth

7am - I called the on-call service again. I asked if we could just be at the office when they opened at 8. She said no - we have to call at 8 and make an appointment. ^%$#@!  Hopefully, they'll see him fast. I'm ready to go.

I thought about just taking him to emergency, but that process would likely take ages. In the end it may be faster and more efficient to call the office.

We really feel left to fend for ourselves. My advice to anyone having chemo for the first time - do it towards the beginning of the week so if trouble hits, you'll be able to get help from the office without waiting over a weekend.

The on-call PA was nice this morning. I don't want to make her out to be cold and heartless. She said they would likely make a number of adjustments in chemo 2 and that chemo side effects should not be this bad.

7:30am – try another Zofran – it dissolves in mouth – easier to do than swallowing a pill with water, which would likely bring on another attack of vomiting

After 8 - Went to Dr’s office this am.  Had IV fluids and Phenergen and Attavan thru IV.  He vomited again around noon while getting fluids.

Came home with 2 new Rx for nausea – Prometh/PLO wrist gel and Transderm-Scop ear patch.

He's a tiny bit better after the fluids. I think his color is better, but he still says he feels awful and he's weak as can be. He got fluids, nausea meds thru IV and now has two additional nausea meds that are not oral. One is a patch. The other a cream. We started those around 1pm. They said each of the drugs approaches nausea from a different angle. Hopefully, we have all the angles covered now.

Went 9+ hours without getting sick but sometime in the evening vomiting  started again

ALSO - if anyone needs to talk to me over the next few days, text, message or email me and I WILL CALL YOU soon. I'd like to limit incoming phone calls if possible to give Rudy a chance to rest undisturbed. He's exhausted.

Chemo: Anti-Nausea Menu

Rudy woke up 3am and vomited soon after.  

Started Zofran (anti-nausea) at 3:50am.  

Vomited again around 8am.  

Thought the nausea might be over. He had a big breakfast (bacon, eggs, rolls) around 9:30 or 10. I didn't think that was a good idea, but it's what he wanted. He slept a long time. 

Vomited 1:50pm.  Tried Zofran again.

Vomited 3:30.  Called the after-hours number and talked to the on-call physician's assistant.  

Rudy now has a 2nd nausea med to take – promethazine (taken around 4:10pm).  My mom had this from her cancer treatment a few years ago and the PA said that was what she would prescribe so it’s fine to take it, even though it’s old.  The PA advised sticking to liquids for the next 24 hours - like with a stomach flu. She said taking him to ER for fluids was not necessary today, but if the vomiting continued thru tomorrow, I should call the office. The PA also said he'll likely need stronger nausea IV meds with chemo round 2. Plus, we'll be sure to start taking the pill form BEFORE he gets queasy.  

He had another bad bout of vomiting around 6pm.  I went out and picked up Sea Bands (acupressure wrist bands). Found them at a drug store 20 minutes away!  Funny - while there the pharmacist got a phone call asking if they carried Sea Bands.  It turns out, it was Linda calling.  She was trying to help me locate some.

The nausea and vomiting is unreal.  I know we'll get this in hand, so I just have to keep telling myself that.  But it sure is hard watching him suffer.  It's horrible and I feel helpless.  There's nothing I can do to help.  Surely next time will be better.  I'm documenting everything so I can hand it all over to CTCA for Round 2.  

The medical oncology community try real hard to make sure patients don't go thru this awful vomiting anymore.  I guess the first round is often a gamble.  I know I said this before - 1st time chemo patients should not have their chemo on a Friday and be left adrift over a weekend (when offices are closed).

I'm putting out an all-call in case anyone can think of other ideas I may be missing.

Link to Post

Next time, he'll take the anti-nausea stuff BEFORE it hits.  Meanwhile, I'm trying to get organized for dealing with the appetite and tummy issues.

We've already been dealing with loss of appetite and nausea for a week or two because of the pain meds. Now, the pain meds have changed, but the chemo nausea is kicking in.  At least we had one good day between.

For chemo patients experiencing nausea and/or vomiting, it's recommended to:

• eat more often in smaller quantities
• avoid things that are greasy or spicy
• eat with plastic utensils if there's a metallic taste
• try things that are cold if smells are the problem

Rudy shot that out the window this morning and had me fix him a full meal - bacon, eggs, and toast.   That's certainly not what's recommended, but he wasn't in the mood for advice.    It'll be a miracle if that stays down.  

When he knows he needs to eat, he hates me to start naming things.  But I can tell he's frustrated because he can't think of anything to have. My solution is to have a menu of snack or mini-meal ideas. I've started working on it.   * These are not the high-nutrition things I'd love to see him eat the majority of the time.  These are "get something on your stomach that won't make you nauseous"  things.  

Below is the list I have so far. If you can think of anything else to add to the list, please let me know!  * I am updating this list every so often with suggestions from others.

Fruit

• Banana (room temp OR FROZEN)
• Apple
• Applesauce

Breakfast

• Toast
• Eggs
• Roll + Apple Butter
• Pancakes
• Cereal
• Oatmeal
• Grits

Snacks

• Yogurt
• Popsicle
• Crackers
• Orange Sherbet
• Pudding

Drinks

• Gingerade
• Tea
• Water
• Smoothie
• ENSURE
• Instant Breakfast
• Boathouse Farms Green Goodness

Anti Nausea Candy

• peppermint
• lemon drops
• 
  

MORE

• Cornbread and Buttermilk
• Soup or broth
• Rice
• Baked Potato
• Pasta (plain or with a little broth)

Additional Resources

Link to Recipe

Fentanyl

Great day.  No pain thanks to new pain patch they prescribed for Rudy yesterday – Fentanyl

Knock on wood, but it looks like this may be just the ticket for now.  Hopefully, soon, the tumor will begin shrinking and meds can be reduced.

He slept last night.  He seemed relaxed and comfortable and seems good this morning, too.  Woo Hoo!

Bedtime – he began to feel a tiny bit funny in his tummy – he SHOULD have taken Zofran!

So many have mentioned that they'd like to visit. As great as it would be to see friends and family this weekend, Rudy really just wants to recuperate from yesterday and relax as much as possible while he sees how the long list of chemo side effects plays out. Hopefully, the effects won't be too bad - especially since this is just his first round.

Chemo 1

Rudy had his first round of chemo today at Piedmont Newnan today.  Linda and Nancy were with us the whole time.  It was a long day.  We were there from 8:45 to 4:15.

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?

I talked to CCTA

CTCA stands for Cancer Treatment Centers of America, but I'm hoping to call it Can Take Cancer Away.

Rudy and I are very blessed.
We have MANY people who have special places in our heart!

As posted before, I have a number of friends with contacts there and I got a call from one more friend today - Renee - and now the ball is rolling.  If there are no snafu's, Rudy should have his second chemo at CTCA - Friday, Dec 12, the same time we would have had the 2nd treatment with Assikis.  Please pray that the transition goes smoothly!!!

Renee called to tell me about her contact, Amy, and after several phone calls and emails, Amy helped put everything in motion.  Rudy is now in their system, Release papers are being faxed.  I have talked to 3 patient advocates and ended talking to a man named Ryan who took me through the whole process.  I have been given LOADS of information.  Everyone was wonderful.

There were several standout points.

When we go for our first meeting (around Dec 10), we will meet with the lung team, including several doctors from the oncology dept, a nutritionist, a naturopath, and a mind/body specialist.  He explained the importance of each one of these people and the inclusion of the naturopath and nutritionist, in particular, will be important for me.  Not only will the nutritionist and naturopath tell us what to eat/what to take, but they'll also tell us what to avoid.  There are some herbs and supplements that conflict with certain chemo treatments.  They can cause side affects, or worse, cause the chemo to be far less effective.  He told me an example of this and it touched on the very thing that scares the heck out of me.  I am reading about this and that and, to me, it all sounds like what Rudy needs, but what if what I give him is hurting him? I could kill him with kindness! So having the help from people trained in these areas will be wonderful.  Even better, they are trained in what is good for you AND what works with chemo!!!!!!!!!!!!!  Most nutritionists and naturopaths don't have that extra piece of the puzzle and it's a very important component!

They will have specialists who will be working directly on pain reduction and there are many other options that are less debilitating than hard narcotics and they can be even more effective.  Rudy would be thrilled.  He wants to drive that Challenger when it arrives!!!

In case you are wondering why we aren't switching sooner, it has to do with an agreement with the state of Georgia.  CTCA was required by GA to take at least a certain number of patients from out of state and no more than another amount from GA.  I don't know if they are trying to bring in more out of state business or what.  The bottom line is they have maxed out their GA residents for November.    Since chemo is set to begin this Friday, they felt it was important to not put that off and I heartily agree.  A patient feels best just prior to the next chemo, so that's when he'll be brought in for the transition meetings.

One more tidbit that I found sweet - they have what they call a "Mother Standard of Care".  They want their people to treat every patient like they would want their mother (or father or child or sibling) treated.  From what I experienced today, they are on target.

I want to thank Renee and Amy for their help today!   Shirley is also contacting David Kent, who I hope will be able to make sure the transition is swift and smooth.   Having his extra push will be icing on the cake!

Also, to Kathy H, Kathy G, and Lorraine - Amy knew Dr Schuler and said EVERYONE loves him.  She also knew Bruce love and spoke highly of him, too!  It sounded like they must be friends.  We have some great contacts and I feel like we're going to be in loving hands.

Cancer Treatment Centers of America

All things seem to point to Cancer Treatment Centers of America right now.  I plan to call there this afternoon.

I have a number of contacts to start with there.

The first contact appeared a couple of weekends ago.  Lorraine, the owner of Rockin B, sent me this - ...  Last week this guy bought a book...long story short... [Bruce Love is a chef at CTCA]. I just asked him if we had someone very dear to us that needed an "in" there would he help..Without a word he wrote his number, said to call and he would direct you to the best Dr for the situation.  I know, funny how things work.  Kathy and I just looked at each other and teared up.  We knew he was supposed to come buy that Cajun cook book...  People come from very far away because they are so talented there. I couldn't find his name on the site, but I liked what I read about their Culinary Services!

Shirley, my wonderful friend who is the Team Rudy organizer, shoulder to cry on and much more, has met David Kent, the Chief Operating Officer at CTCA.  She has emailed him the most wonderful note asking for assistance.

I also got plenty of calls, emails, messages, and comments from people who had friends with CTCA success stories or people they knew who work there.  Here are excerpts from a few I could put my hands on quickly  -

• A friend's husband went to one in another state before they built the one in Newnan with stage 4 lung cancer that had spread to his ribs and they did several combined traditional and alternative treatments and he survived for 11 years before getting sick with an unrelated illness. 
• I do know that our favorite doc ever works there. John Schuler was our fam doc for years.  - This message was from my wonderful friend Kathy H.  She introduced me to our favorite doc ever Barry Hull.  That man was a saint.  He changed fields, otherwise we would have stayed with him for life.  If John S was her favorite, even over Dr. Hull,  then this guy must truly have wings.
•  I had a friend who went thru numerous rounds of chemo, experimental chemo and went in remission for awhile. then cancer returned. Oncologist said nothing else to do. She went to cc of America and she has found new hope. She is currently ok. Just one story but a good one. She had colon cancer that spread to her lungs and I don't know where else.

There have been plenty more - lots of success stories and tales of people who were cured and now volunteer there.

When I first researched them several weeks ago, I didn't go there at that time because they don't take you until you have an actual diagnosis and completed tests.  We were still involved in the endless testing and trying to get the confirmed diagnosis.  I was so frantic and wanted to get Rudy's treatment started fast.  The process of getting a confirmed diagnosis and getting started with treatment always seems to take sooo long.

Even though I chose a different path to get started, I always kept CTCA in mind.  I knew that if we ever felt the need to change, this place was a definite possibility.

Most any good oncologist can prescribe a chemo/radiation/surgery protocol that best suits a patient's particular cancer.  What I want for Rudy are the additional services.   I want MORE than just traditional treatment.  I want the pain management.  I want the nutrition therapy and the acupuncture and the naturopath services. I want cheerleaders and professional people who will boost his HOPE. We need the extras than can make all the difference in the world.  The people who surpassed all expectations after being told they wouldn't survive always did MORE.

By the way, if someone you know is going the traditional route and their doctor feels confident in the expected success, that's a different story altogether. Still, I think every cancer patient should at least study the impact nutrition has on cancer.  It's been a real eye opener for me and I thought I knew a good bit about nutrition.

Wrapping Our Head Around Bad News

I find it repulsive to write our bad news on the internet, but hopefully, putting it here will keep me from having to repeat it over and over.  I would have rather talked to MANY of our friends and family personally, but I CAN'T repeat the bad news.

The Bad News
The PET scan showed cancer in 14 places, including bone and liver.  It’s stage IV, non-small cell, “not-otherwise specified” whatever the hell that means.  Rudy will have “Standard 1st” chemo every 3 weeks.  After 3 months they will evaluate to see if that protocol is working.  There’s a Standard 2nd and a Standard 3rd which can be used if the 1st stops working.  There was more said about chemo and such but my brain (and heart) had left the building and I didn't bother to write any more.

We all – Rudy, me, Linda and Nancy – took in more than we could handle. Nancy had to leave the room, but the rest of us stayed (turned to stone is more like it) and tried to focus.  I think we were hoping for a sentence with a glimmer of hope.  The best that was offered was to work towards living a bit longer and living a bit better – quality and quantity.

After we left the doctor’s office, our emotions were all over the place.  I talked to a few people on the phone last night and I think I even managed to participate in conversations, even though it felt like I wasn't there. If I sounded weird or off or disconnected, it's because I was.  Enough of that.

A Glimmer of Hope

The main information I want to share is that after the news started spreading and so many people prayed for us, at some point Rudy announced with conviction he was not rolling over.  We are going to fight. I burst into tears and felt hope. Maybe it’ll work and maybe it won't, but like Rudy said, we have nothing to lose by trying.  Rudy is strong willed and despite his diagnosis, he is strong in body.  I have enough information about nutrition (and a strong desire to know more) to fight this thing and together, we will, at the very least, irritate the hell out of all the cancer cells.

What We Need

We need continued prayers and love.  We need help.  I’m questioning every single thing I do.  I’m questioning big decisions like if we should jump ship and move to a place where they do more than conventional treatments. I’m questioning small decisions like whether the "nutritious" fruit he eats is turning straight to glucose and going directly to those disgusting cancer cells.  I am changing my mind daily depending on the latest article I've read.  I don't know what to do. I'm mixed up and confused.

Rudy needs help with pain.  One tumor is pressing on a nerve and it’s affecting everything.  There’s a chance that the first chemo treatment will ease that and if it does, it could make a huge difference.  He also needs peace of mind and continued willpower.  We need lots more.  God will know what we need even when we don’t.

For those who have the time or inclination, I am going to begin posting (mostly on our Facebook page) specific things we need help with.  Not everyone will have the time or the knowledge to help with these. If all you do is pray for us, believe me, that's a major help!  Some requests are for the people who are very close to us who have been feeling helpless and not knowing what they could possibly do.  Some are just questions in case anyone has a bit of knowledge about one thing or the other -  a connection, an antidote, advice.  I’m just going to start throwing questions out there because I don't have time to carefully research everything that’s spinning thru my head.

There’s one very specific thing I’d like help with.  It’s a biggie in terms of time. It's something that only those who enjoy this sort of thing will want to do.  If you don't have a "researcher type personality", then pass on this.  I'm sure I'll ask for help in some other way that will suit you better. I would love extra help with reading books focusing on an integrative approach to beating cancer.  I have 4 books I am using to help guide me.  They are highly-rated and each has information and tips that could prove helpful.  I am having a hard time finding the time to read them like they need to be read.  If anyone would like to read any of these and pass along key points and pages I should jump to, I would really appreciate it.  If this is the kind of thing you feel you would be good at, let me know which book you'd like and I'll buy it for you.

The Cancer Fighting Kitchen - This is a REALLY good choice for ANYONE who likes to cook!!!  Cancer or no cancer, there are great tips here!  In the case of cancer,it's particularly helpful for what to eat while undergoing chemo.  If you know anyone else with cancer, this is a FANTASTIC book to gift them!

Beating Cancer with Nutrition - This one has good info. Some bits that I've jumped to are hard to read and requires more concentration than I seem to be able to muster up.  Other bits were helpful and easier to read.  I haven't read enough to fairly judge it.  Read the reviews and see what you think.  

Anticancer: A New Way of Life - Good info.  I know this has major helpful info.

Cancer: 50 Essential Things to Do - I feel hope when I read this.  He beat a stage 4, "30-days-to-live" lung cancer diagnosis.

Beyond that, I hope everyone will try to put negative thoughts out of your brain. We already know this will be a difficult, seemingly impossible task.  We're not stupid. We're not delusional.  But we also know that others with a similar diagnosis have managed remission for 14 years and more.  They've amazed their doctors.  If we could somehow turn this around, perhaps our journey could help others to do the same.  We can only do our best with positive, determined people in our inner circle and positive people praying for us.  We could both use a healthy dose of hope.

PS - Rudy really doesn't want to do a lot of talking to anyone just yet.  This is a lot to wrap his head around and he's trying hard to set his mind on the task ahead.  Pep talks, though well-meaning are just hard.  On the other hand, you can never hear, "I Love You" too often.  And if you need to turn the conversation to something lighter, ask him about his new Dodge Challenger.  He ordered this before he got sick.  It should arrive soon.  He thought about asking the dealer to cancel the order, but I talked him out of it.  It's something that will make him very happy and it might help him every bit as much as good nutrition. I find the name of the car particularly meaningful.