Wednesday, December 31, 2014

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.

Tuesday, December 30, 2014

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.  

Monday, December 22, 2014

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!

Thursday, December 18, 2014

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.

Monday, December 15, 2014

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.

Saturday, December 13, 2014

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.

Friday, December 12, 2014

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.

Tuesday, December 9, 2014

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.

Monday, December 8, 2014

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

Saturday, December 6, 2014

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

Friday, December 5, 2014

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?

Thursday, December 4, 2014

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.
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.

Wednesday, December 3, 2014

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

Tuesday, December 2, 2014

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!