Chemo Change from Cisplatin to Cetuximab

Yesterday was supposed to be the 4th treatment with Cisplatin.

Last week Rich had complained about some hearing issues he'd been having.
Immediately he'd been given a audiology test to check his hearing.

He was told that he had high tonal hearing loss, but the rest of his hearing was okay.

Dr. R and Dr A. along with some other specialist reviewed his case along with the results and decided that to continue with Cisplatin would be too risky.  One side effect is hearing loss and apparently the test revealed severe high tonality loss.  The doctors felt that continuing with Cisplatin could cause deafness.

So we are switching to Cetuximab also known as Erbitux today.  So it will be like a 'first' time chemo treatment since the 'cocktail' has been changed.  They will watch him for a while before he is released to go home.

Otherwise, his weight has maintained and he has not lost a lot of it.  We talked about the pain of swallowing and Rich also received medication to ease that.
He is determined to eat and eat and never have to use the PEG or Miss Peggy as he calls her.

This is his goal and he is pretty determined.

Last night he was exhausted and decided that he was not going to eat at all ... maybe just graze a bit.  He is still dealing with feelings of anger or frustration about the major changes in his life and how fatigued he feels.


I think that finding out that he wouldn't immediately bounce back after the treatments ended, has added to his feeling of loss of control.

He figured once everything was done, he'd bounce back to his formal self.

I tried to remind him last night that this was a major illness he was fighting and it would take time for recovery.


At the end of the week there are 15 radiation treatments. After today, there are 3 more chemo treatments.

What about his perspective?

What is it like to suddenly have your life turned upside down and everything turned crazy at once?

What is it like to suddenly have your quiet life in upheaval.  Doctors and family members are rushing you from one treatment to another.  One appointment after another.

Your quiet life on the little farm is now gone.  It is suddenly replaced by a steady stream of labs and appointments all week long.

You feel sick, you feel as if you have no energy.  It is a struggle each day to eat and to take your medicines.  You don't dare drive or go anywhere because you feel woozy and weak.  Your throat burns and you feel wobbly and exhausted.

Your life has been taken from you.  Yet the doctors and nurses say how well you are doing, the tumors have shrunk so much.  
They don't live in this horrid little world.  No one does but you.  You ache, you are tired, you have no life anymore.

You are offered little platitudes from everyone.  Nurses say "One Day at a Time".  You have an idea where you'd like to stick that.

Your life has spiraled out of control.  You no longer have that control of where, how, and when you want to do things.

Your family means well, but they push to get you to appointments on time, to make sure you eat, to make sure you have fluids, take your medicines...
and you just want to sleep and make them go away.

They don't know what it feels like, how could they?  It is not their body.

And you are angry and sad.

They even have the audacity to say it may get a bit worse before it gets better. And you ask yourself, I thought this was worse, I thought this was hell, ...how can it possibly get worse?

And your wife hovers.  She keeps trying to make sure you are doing what you are supposed to do.  You've snapped at her and then feel bad.
You are conflicted and tired, so tired.

You'd give anything just to feel a bit better.
And you know you have to continue because it is working.  But you don't have to like it.

Half way through Chemo!

13 Radiation Treatments in, 20 left to go.
3 Chemo Infusions done, 3 left.

We are entering the 4th week of treatments.  Rich was told by Dr. W of the UW that he would have a very difficult time swallowing by this time.

Indeed Rich does have a horrid time taking his medications.  His mouth feels awfully dry all of the time and foods have begun to lose their normal taste.

This mostly from the throat radiation.
Yet Rich insists on continuing to eat small portions of food. Mini meals.  He can't drink anything carbonated at this time as it burns his gums and throat to the point of tears.

Milkshakes and smoothies however go down nicely.  The cool drink and the 'smoothness' of it slides right on down.  We have fortified the drinks with protein powder and I am looking for some protein drinks to have along for anytime 'snacks'.

He ate a vegetable soup with hamburger in it the other night ... two small bowls and was delighted to eat it. Other meals include scrambled eggs with small chopped up bacon sprinkled with cheese.
He can still eat lightly toasted English muffins with a huge slather of homemade jelly on it.  
My efforts at homemade jelly are really being appreciated at the moment.

How is his energy level?  Awful.  Dr. W. told him to rest and sleep ALL weekend because he'd be back at it come Monday.

He is exhausted, which we were told is normal for someone to have both radiation and chemotherapy at the same time.  The effects of radiation will last up to ... or beyond 4 weeks after treatment stops.

Rich wasn't pleased with that information, but since his tumor on his lymph node can't be felt any more...and the one on his tonsil is 'pea' sized.  
This godawful treatment is working. 

His daughter and I keep concocting meals that are high in protein and carbs along with drinks that replenish what chemo takes out of him.

We are learning as we go and it isn't easy.  
But we sure have the determination.
Which could only be possible with support from friends and family.

Understanding Respite Care

Respite care is something I heard talked about before we started Rich's treatments.

But of course ... I am tough as nails and can deal with anything, right?

Actually that isn't quite correct.  

Rich's daughter offered to come up this week and give me a break.  I was pretty sure I didn't need it.

She arrived and ...

... suddenly I wasn't rushing to 'get this done' or 'that done' at break neck speeds.  I wasn't trying to plan out my every move to make everything super efficient.

And yesterday I stood alone in the house and felt perplexed.  I wasn't on a time schedule for the first time in a month.

I was free to do what I wanted.

I didn't have to go to work, I didn't have to drive to the hospitals, and I didn't have to do anything.  If I wanted to, I could read a book or watch birds.

It felt odd.

I felt as if in limbo.

So then I decided to do the next sensible thing.  Farm work.  I occupied my time by 'making' fence'.  Certain areas of the property are usually mowed by now, but haven't been.  So I made electric paddocks for 3 of the mules, they can rotate from one near the house, one near the area where we store round bales, and another area alongside the driveway.

I was able to talk to Rich last night in a video chat, a new experience for all of us as our grand daughter and I set it up.  It was fun.

Rich's reports from the doctors is uplifting.  Only 3 more chemo treatments are left!

He gained 3 lbs this week.  So we are so far beating the 'feeding' issues that come along with throat cancer treatments.

The extreme fatigue is expected when bombarded with chemo and radiation at the same time.

His time at his daughter's house has been helpful.  He is interacting with the kids and visiting with his daughter when he is awake.

This was a concern last week when it seemed he wanted no social interaction with anyone.

So here we are.  Another week done.

Who's counting?

Oh we are for sure.

Rich comes back today while I am at the Range getting my Qualifications done for my Armed position.

I miss him.

But I surely did need the Respite Time.

Respite:

noun

1.

a delay or cessation for a time, especially of anything distressing or trying; an interval of relief:

Meet with Docs and mega power meals

Good news.

His daughter took Rich this time for his Chemo treatment and she took the voice recorder.

So yesterday he found out that he only has three Chemo treatments left.
Halfway home with that!

And this Friday will be 13 Radiation Treatments under his belt. That means 20 left.

It is amazing that he is still swallowing and eating according to the doctors.  Yes there is pain involved but he manages to eat.

Yesterday the doctors were amazed.  He had actually gained a small amount of weight from their weigh in last week.

I listened to him brag on the 'cooking' of concoctions that I'd been making all along.  
One dish I made was a layer of ground beef in a lasagna pan...extra ground up.  A layer of cheddar cheese, a layer of mashed potatoes, more cheese and then topped with bacon.

Doesn't that just scream calories and carbs?  Well even with a sore throat Rich as able to eat that.
We've also done a lot of scrambled eggs.
For snacks, I've made power drinks out of Ensure protein powder, yogurt, whole milk, malt flavor, fruits .. or chocolate, and ice cream.

Apparently these drinks go down like silk and he has up to 3 or 4 a day.

Today I will be making a soup that I can then blend slightly to make it easier to eat.

I'll freeze it in small packages.  The cheesy scalloped homemade potato dish disappeared last night so that is another meal I can make.

Another postive note.  Dr. W from UW said the tumors are receding.  Yesterday Dr. R could 'see' the difference by looking in his throat.

These are all positive things.  Yet Rich still is fatigued, weak, wobbly, and woozy.

After all, he had his Toxic Cocktail yesterday.

I am actually getting a break from being Care Giver.  I think it was really needed.

Emotionally I am feeling better.  I think a long nap will be in store for me tomorrow as it is supposed to rain most of the day.

Today the sun is shining and I think I have some things I'd like to do just for me.

Small Victories

Yesterday's visit with Radiology was quite surprising.

Rich's weight had only gone down 2 pounds since last Monday.  The Radiology Nurse felt that it was a job well done considering the week before he'd lost 8 pounds in 4 days.

I was shocked myself but very pleased also.  It meant we were doing something right.  
I'd been making shakes out of fruits, yogurt, ice cream, ensure protein & calories booster powder, and milk.  I'd made different blends and he'd been drinking a glassful of it whenever he felt like it.

I'd made home made macaroni and cheese and he'd eaten that in small meals whenever he wished.  Frequent small meals.

Anything that he felt like, he grazed on.  Sometimes it was good food like an apple, and sometimes it was not so great like a Hostess Cupcake.  

His energy level still concerns me.  He is so exhausted that he stays in bed almost all of the time.  I was reading the side effects of Cisplatin and extreme fatigue was one of them.  I'm not sure that staying in bed as many hours as he is, is healthy.  It causes him to be more depressed or is it depression itself?

Hard to know.

But yesterday's visit was a positive one.  Nurse coordinator Jackie from the UW told Rich as long as he could keep his weight up he didn't have to worry about the Jevity.  Of course I got the smug glance from him!  That is okay with me though.  I thought I was doing the right thing, but since we'd kept him from losing more than 2 pounds, I figured it was a victory all the way around.

Rich's daughter had emailed me very early in the morning that she and the kids would be coming to visit in the afternoon.
She thought she'd take Rich for Chemo and Radiation today and let the kids stay with me.

I welcomed the company and the offer.

This is exactly what was needed for a Care Giver break.  I get to do things with the grand children all day and rest a bit.

Steph and I worked most of the afternoon on trying to figure out what meals we could cook up for her Dad so that he could graze all day.

For supper I made a huge pot of spaghetti and some garlic bread.  I cannot say enough how much of a pleasure it was to sit and eat with other folks.

Then Rich ate two small helpings and I felt like jumping up and down. Another mini victory.

Today is Radiation and Chemo day.  Steph is an angel for coming to the farm and staying.  She really saved my sanity.

Small Victories.
One day at a time.

13 days

Well, here it is, 13 days of going straight at it.

I think this is where I can look back and say I've got a bit of Care Giver Burnout.

It isn't pretty.
A Care Giver who doesn't take a break can be cranky, tired, overwhelmed, and sometimes even not so pleasant.

I'm trying to be pleasant, but I hear myself as a Nag.

"Did you take your medicines?"
"What did you eat?"
"How is your stomach?"

You get the idea.

I reminded him this morning that we had only 45 minutes before we had to leave. 
It was a nag, it was a push, it was...well, it was the truth.

I hate my job today.  I would just love to let him rest and do exactly what he wanted.
But course of treatment dictates otherwise.

He is tired, he is not feeling good, he is losing weight.  Getting the stomach on a happy medium is nearly impossible.
We swing from one extreme to the other.  
He resists the thought of taking Jevity which will keep him alive.  I do not remind him that if he continues to not take it and loses more weight that Nurse Ronnie will just have him admitted to the hospital.


Making up food that he can eat consumes most of my free time.  
I've joined a site called CancerCompass that has great information on all types of cancer.

There are tips on how to get through, what might be helpful to eat, what people's experiences were and lots of support.

There is even a section for Care Givers.

I wonder if a care giver experiences frustration also when a patient who feels miserable is not very cooperative.
13 days since we started.

We still have until mid June just for the daily treatments.  And then follow ups after that and dealing with the longer lasting Radiation side effects.

Onward.