Pain and Nausea at Bay

The last few days have been crazy, but all the crises are under control (for now).  Rudy dealt with unrelenting vomiting and nausea.  He dealt with swallowing being a challenge - it felt like everything was sticking in his throat.  Pills were the worst.  Finally, he dealt with pain that became so unbearable he was unable to function.

Humor gets me through!  I've been chanting the real serenity prayer for days.  I came across this one this morning.  It gave me a good chuckle. 

I *think* we're fine now.  I slept and am able to think and function again.  Rudy is currently not nauseous or in pain.    He has better, longer acting meds for both issues and right now they are working like a charm.  His esophagus issue seems to be getting better.  He has an appointment scheduled to get that checked just in case.  If there is a problem, there are things they can do.

The pain meds are some that are fairly addictive, but it's hoped that he won't need them long - maybe a week at most????  Possibly less.   We hope the chemo (HE DID HAVE CHEMO YESTERDAY!!! :-D ) and targeted radiation will knock the tumor down fast and get it off that nerve.  From what I've seen so far, the pain meds don't seem to make him too loopy.  He seems like himself, just maybe a tad more cheerful.  The cheerful might be more of a result of the lack of pain and nausea.  That's certainly reason enough!  I hope the cheerful effect lasts a long time.

This was me yesterday. 

We'll meet with pain management again next week.  They may even be able to  go in and deaden the nerve to the annoying tumor so that even if it does expand again, it won't make him so miserable.

Yesterday, Terri talked a little more about the immunotherapy.   Rudy will have another scan in 3 weeks to see how he's responding to the current chemo - the Carboplatin-Gemzar regimen.  If it's not a big success, then we'll look at switching to immunotherapy.  That treatment is in the last phases of trial and it's been amazingly successful on many types of cancer.  Rudy's type of cancer is one it's particularly good with.

Maybe immunotherapy will replace chemo one day.

Rudy doesn't seem to be cut out for chemo, so we're really hoping he's being led to immunotherapy for a reason.  We'd love to be one of their success stories!

Birthday Rollercoaster

Apparently, Advil on an empty stomach leads to major trouble for Rudy.  He dealt with unceasing nausea from 2am to around 9am.  At CTCA, they gave him an IV mix that dealt with pain, nausea and fluid loss and now he is almost back to normal.  He's a little nervous about eating yet, but hopefully, he'll be back on track as the day goes on.  His sister, Nancy, baked him a chocolate cake with her famous homemade icing.  Surely he'll be able to sample that sometime later today.  It's one of his favorites.

We're home now and both of us are wiped out.  We'll be turning off the phones and chillin' out for a while.

GOOD NEWS - they did his lab work while at CTCA today and he's on for chemo!!!!  I had the word definitely in that sentence, then took it out.  It seemed like pushing our luck.  We've learned that things can change fast.  One minute we're up.  The next we're down.  I never did care for roller coasters.  There's a movie I see listed often, called The Magic of Ordinary Days.  That title grabbed my attention and I can't hardly stop thinking about it.  We really miss ordinary days.  I know I'm rambling, but I'm so tired that I'm not even going to go back and edit.

CTCA took great care of us, as usual.  Tiffany was our nurse today.  This is our third time with her and she feels like family.  We also had a physicians assistant named Brandy, who was fabulous.  We're becoming close to so many people there.  Daniel, one of the valets, is a real sweetheart.  He took care of us today, too.  Brooke, from Dr. Thompson's office, spotted us near the cafeteria and bolted over to check on how Rudy was doing.  She let us know what all they were doing from Dr. Thompson's office.  Everyone coordinates so well from department to department.  We know full well how rare this is.

My point is, our path is not smooth.  Our journey is not easy.   But having so many wonderful people giving us such love and support along the way makes it bearable.

I'm sure I'm forgetting some details, but it's all I can write for now.  Rudy is already asleep.

Everyone - thank you for your prayers and love!  Hopefully, the rest of his birthday will be nice.

Nausea Solved - Low Potassium

Lesson for the week: If you have an extended bout of vomiting or diarrhea, make sure to replenish those electrolytes - particularly the potassium!

It's quite a conundrum - Vomiting can cause loss of potassium.  Low potassium can cause nausea.  Oral potassium supplements can cause gastric distress.

Rudy was given fluids with potassium Tuesday and within MINUTES, he found relief.  Apparently, the steroid was out of his system, but his potassium had dipped so low that he was continuing to be nauseous and he kept vomiting up anything he tried to eat or drink.

Once the potassium was in, he felt so much better... EXCEPT --- he had thrown up so many times that his back and stomach muscles were killing him.     So after, the fluids and potassium, they gave him some happy juice thru IV.  I can't remember what it was, but it looked like fun.  It didn't make him loopy, but it made him loads of fun.  He was entertaining everybody!  He continued entertaining me well into the evening.  He was so happy to feel good.

We had a really fun nurse.  Her name was Brooke and she was hilarious and cute as a button.  She's expecting her first child in a few months.  We're hoping to see her again when Rudy goes back next week.

Wednesday morning, the happy juice was wearing off and the soreness started returning.  I gave him a long massage and he planned to just lay around and recover.  He acted like he was OK (because he didn't want to worry me), so I took off to run a million errands.  I was halfway through when he called and said the pain was horrible - a 10 on the 1 to 10 scale.  He has never said that.  Rudy is generally tough as nails. I flew over to CTCA and my parents, who live right next door, drove Rudy over.  I went to Dr. Thompson's office and Brooke (not the nurse from Tuesday) set everything up for Rudy to get checked into the Quality of Life Department again.  We feel like we know many of the people who work in that department now.  They are all very nice, but boy, the place was hoppin' last night.  Apparently, there were a lot of emergencies all day and all night.  Everyone looked worn out, but still managed to be super nice and happy to be helping people.  We had yet another standout nurse - Heidi.  CTCA really manages to get the best staff!!!

Rudy got some more happy juice and they set up an appointment with pain management for this morning.  If Rudy's pain was going to continue, we'd need to find some other option besides happy juice.  The crazy thing, when he got up this morning, he kept waiting for the happy juice to wear off and the pain to come back.  We thought it might be a little better, but it was MUCH better.  He can still feel where it hurt, but it's nothing that warrants any kind of pain meds at all.  If you'd seen him yesterday, you'd be as surprised as we are at the improvement.

We've had lots of family help and support and love this week.  Linda and Nancy have dashed over for every appointment.  They helped with picking things up. Carl and Linda brought Rudy chair pads that heat up, heated blankets that plug up into the car, Naproxen for me (my TMJ chose this week to flare up big time), and more.  We've had lots of calls and emails and offers of help, too.  Our niece Carly and her husband Evan even managed to send flowers even though Carly's on a fun trip in Hong Kong with a group of her friends.  Evan stayed home and did a great job getting the flowers.

Carly is all the way on the right.  ♥

We have been on a crazy rollercoaster for pretty much the last week.  We got home around 11pm or so last night.  Our pain management appointment was at 8:15 this morning.  When we got home, we both crashed.  Absolutely crashed.  I think we woke up around 3 pm.  We feel human again.

This whole cancer journey is full of surprises and things that seem to make no sense at all.  Last night, in infusion, they gave him the first dose of happy juice and then we needed to wait a bit to talk more to the doctor and get a second dose of happy juice.  Rudy was no longer in pain thanks to dose number one.    There were many emergencies being dealt with all around us, but we were fine.  We sat in the room and talked and talked and as crazy as it sounds, we were happy and had a really nice evening.

Nausea Continues

Valentine's Day wasn't all that sweet.  We spent a good part of yesterday at CTCA.  Rudy was dehydrated so they gave him fluids.  He felt better for a few hours, but the nausea and vomiting returned during the night.

This was a deja vu experience, except that CTCA addressed the issues much better.  With the previous episode, no Piedmont doctor saw Rudy even though he went to their office 4 days in one week for fluids due to prolonged vomiting.  Not once.  We felt abandoned.

This time, a doctor saw him right away.  He wasn't told to wait til normal office hours and then call.  We went right in on a Saturday.

There's a chance he may have to go back tonight.  We've been hovering all day.  He's still super nauseous and threw up several times this morning.  We talked to his care manager and she gave us a few suggestions.  Rudy agreed that if he threw up one more time, we'd go back over.  So far, he hasn't thrown up, but he has felt like he might every moment.  He's miserable.

I may over-ride our agreement and insist he go back over.  The amazing thing - even if we decide to go at midnight, CTCA will be ready for us.

ALSO -

Do you believe in more options
for cancer patients in Georgia?

Please go to this link and help 

make a change for Georgia residents -

http://www.cancercenter.com/georgia-patients-first/

CTCA is trying to get the law changed that limits the number of Georgia patients they can treat.  Rudy wanted to switch over in November, but had to wait til December because the Georgia quota had been met.  I have heard of some people who tried to get in during busier months and the waiting list was so long, they gave up.  I just don't think that's right and neither does CTCA.  People deserve a CHOICE.  When fighting cancer, a patient should be able to choose where they are treated.  They shouldn't be shut off because of a stupid quota meant to give other local hospitals more patients.  If other hospitals want more patients to choose them, they need to earn that choice, just like any other business.  They need to work hard to take care of patients and treat them well and help them feel truly supported in their struggle.  A business that doesn't put their customers first, loses their customers.

Getting this law changed could have a big impact aside from allowing patients a choice.  If other hospitals felt their patient numbers were dwindling because to the added competition, they'd likely start working harder.  Maybe they'd take a close look at all the things successful hospitals, like CTCA, do that makes patients so happy.  It's not that they promise better odds.  It's all about how much more they seem to care and how everything in the facility is designed to make a huge life challenge as comfortable as it possibly can be.  Every single patient we've met, regardless of their prognosis,  feels blessed to be at CTCA.  It would be really nice if all hospitals and medical facilities treated their patients so well.

CTCA Appointments for January 14

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

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

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

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

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

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

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



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

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

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

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

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

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

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

Meeting Paige... No Coincidence

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

Paige

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

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

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

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

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

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

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

Photos of CTCA

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

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

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!

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.