Friday, May 29, 2015

Chemo and Rad, counting the days


Well we were waiting for the lab department to take his blood for anylisis before chemo on Tuesday.  I held the camera at waist level and snapped this, his number was 100.

Today was a good one.  I met him at the infusion clinic with Nurse Jackie.  The mental health 'team' had made sure to 'medicate' him properly so that he wouldn't have an anxiety attack.

This was a good plan.  
Not only that, he was released into my care for the weekend with a heavy schedule for next week.

Thank goodness for electronic calendars, I can enter appointments in them and then can change them as they change for us.  I can make it so his daughter can see the very same appointments.

As of today, Rich only has 10 Radiation treatments left!

Dustin, the RAD tech calls Rich ~ "Hollywood" ~ probably because of the bright colored western shirts he loves to wear and his very cool sunglasses that he even wears indoors.

As of today, I think he has only two chemo treatments left also.

I'm not saying we are out of the woods yet but I can say this, we ARE counting the days left, the treatments left, and looking forward to recovery.

Eating food is difficult for Rich, but he is persevering.  We stopped on the way home from the VA and he ate a large Ham and Cheese omelette along with a large portion of hash browns.  While he was a patient, the nurses kept him supplied with ice cream bars, snacks, puddings, and as many items they felt he could eat.

Throat Cancer Treatment, as told by Dr. R., is one of the most toughest regimes of cancer treatment to go through.  The patient has to face a daunting regime of up to 33 radiation treatments to the throat, along with 6 to 7 chemotherapy treatments.
Nasty side effects are things like destruction of the saliva glands, which may or may not come back.
Foods may never taste the same.
Some people lose their ability to swallow food and have to be feed through a PEG tube while taking physical therapy to try and get back their swallowing muscles.
The skin on the neck becomes tender and hot.  As I've heard folks describe it on Cancer discussion boards, your throat 'cooks' for weeks after radiation stops.

There is weakness and extreme fatigue.  There is an emotional roller-coaster ride for both the patient and those around him.

But the results are often very encouraging.  

We keep looking for the positive outcome.

So today we rejoice because Rich is home for the weekend and so far he has been sleeping comfortably on the futon his daughter and her husband brought today.
We re-arranged the tiny living room so he would not have to negotiate stairs at night to use the bathroom.

Tonight we end on a good note.
All is quiet.

One more day.

Thursday, May 28, 2015

Update ~ Mental Health

Well the powers that be finally did transfer him to the Mental Health floor.

It is a lock down floor.  It didn't used to be this way, but changes over the past few years have made it so.

My husband's room has no shades, blind, curtains.  No door to the bathroom.
His bed is bolted down.  There is a chair, it is steel and bolted to the floor.
There is no patient phone.
All calls are screened through the nurse's station.

His room is locked.  He can open it up and ask to see a nurse.  Nurses access him by key.

He is not bothered by this as he feels that his cell is a safe place for him to be.

His team of doctors that saw him this morning told him that he needed to socialize.  He said no.  The last thing he wanted to discuss was war stories with other vets.  He just wanted to be left alone.

I know, you are probably thinking that this is anti social behavior, and yes it is.  But he feels safe right now.  
He has made his radiology treatments and says he must be prepared to do chemo tomorrow as he wants to do it whether he is in the 'right place in his head or not'.

He told me that this cancer is not going to beat him.  At least this is a good attitude today.  We have talked often on the phone.

He cannot use his CPAP at night unless his door is open and there is a nurse sitting in the doorway.

He feels bad about that and has decided not to use his CPAP.

His chemo is at 8am tomorrow morning and I will be there to support him.

We are wondering if he'll be discharged on Friday.  We will know Friday.

His daughter and son in law are bringing a futon to put in the living room so he won't have to negotiate stairs for the next few weeks.  They are also coming armed with weed whackers and other tools to help get the yard whipped into shape.

Today I bought a used self propelled mower and started hacking away at the yard.  Last night our wonderful neighbor walked down and started on hacking the grass around the house.

Looking at a nicely mowed portion of yard relaxed me in a way I haven't felt in weeks.  Odd isn't it?

The fellow that we deal with regarding lawn mowers will come out Saturday and give me a lesson on the Country Clipper, which is Rich's pride and joy mowing monster machine.

Back to Rich.  I'll be there for chemo and radiation and then I think I can stay and visit him on the floor or under nurse supervision in a common area.

He is looking forward to the visit.  But is having a hard time with feeling love for me.  He shuts down his feelings while under stress.

The thing is, he still understands what he is doing and knows that he needs help.  We call it Building Emotional Walls.  I'm okay with that as I've been through this before.

~~~~ Update...
Rich will be coming home for the weekend!

Wednesday, May 27, 2015

One battle after another

What in the world to do?  

We made our radiology appointment yesterday.  Rich was wobbly on his feet and still very stressed out over the reaction he'd had last week to the second line of chemo that he'd received.

We were late for our chemo appointment as both RAD and Chemo were scheduled for the same time.

Nurse Jackie noticed right away that Rich was in a wheelchair [he didn't feel he could walk safely to the Infusion Clinic].

Rich is a veteran with PTSD issues from the Vietnam War. The stress of chemo along with the health issues of going through chemo and radiation therapies at the same time were taking a huge toll on his emotional status.  Enough so that when we got to the Infusion Clinic that Nurse Jackie realized that we had a pretty huge problem.

If a person is extremely stressed and emotionally distraught, chemotherapy will only worsen any healing that can go on.

Nurse Jackie recognized what was happening with Rich and immediately began to assess him.  After some phone calls and a conference with his Chemo Oncology doctor, Dr. R, it was decided the best and safest thing to do was to get him admitted to the Mental Health floor where he could get some help yet still be close enough to be treated with Radiation.
Along with that he could get help with his emotionally distress so he could be prepared for on going chemo, which he does want to continue with.

It seemed like an easy enough and simple enough plan.
6 hours later we were still awaiting a decision.
The mental health people didn't want him because he had a PEG tube and used a CPAP at night.
He was taken to the 4th floor and they didn't really want him as he had been labeled as having mental health issues.

We finally got him settled on the 4th floor and Steph and I went home.

As of noon today his attending nurse on the 4th floor felt he should be kept on that floor because of his past issues with chemotherapy.  But the powers that be decided he should be on '2B', Mental Health.

No one but his nurse has had interaction with him.  The admitting physician came in and gave him a quick once over and since he was not ill enough, thought he could be transferred.

No one from Mental Health has seen him either.  A man in pain from ongoing radiation and extreme anxiety from chemo, left in a room with his thoughts of confusion and more anxiety.

It leaves one to ponder what the Veteran's Administration has in place for veteran's who have both medical issues and mental health issues.  At this point it seems that they have no good protocols in place.

The VA works well, when it works.  It needs constant shoving, pushing, calling, and nagging when it comes to letting someone fall through the cracks.

At the moment, I am at home trying to push, shove, nag, and get answers.  My wish would be to sit with my husband right now and offer him my support.

The male nurse we met a couple of weeks ago in the Emergency Dept stopped me yesterday and asked 'Who is supporting you?'  I nodded towards Rich's daughter, Steph.
Truly though?

I feel as though I am in free fall without a safety net myself.

I am only left with questions that are unanswered and doubts that linger.

Last week I nearly lost my husband to an Anaphylactic reaction, this week I lose my husband to the inner bowels of the VA hospital who seems to 'not know' what to do with him.

I know I can't bring him home right now, and at the moment I am too exhausted to drive 2 hours one way to be with him.

The severity of his Anaphylatic reaction last week on a scale of 1 to 4 was a 4, this told to us by his chemo doc yesterday.
I can probably say with some confidence that my stress level at this moment is off the charts.

I feel helpless and frustrated...and exceptionally drained.

Yet, tomorrow is another day right?

Monday, May 25, 2015

Coping with Emotional ups and downs

One of the unexpected issues I'm dealing with this weekend is the after affects of the nearly deadly reaction to Cetuximab.

Rich is beginning to have some emotional issues with his daily outlook on life.

Some of these are normal for patients who have cancer and are undergoing treatment.
In my mind combining chemotherapy with radiation at the same time is a pretty tough regime for the body to handle.
Some things that he is experiencing:

  • Worry
  • No interest in things that were normally of interest
  • Emotional numbness
  • Disconnect 
  • Feelings of no self worth
  • Anxiety
  • Depression
  • Hopelessness
  • Extreme Fatigue
I think that the emotional side of being treated for cancer is taking its toll on him.
He feels helpless, as if he can't do anything that he normally does.
He is extremely tired and fatigued all of the time and has developed severe trembling which seems to confuse the doctors.

I have an explanation for that which is pretty simple.  Combine his medications, add anxiety, distress, emotional fatigue, and physical fatigue, and you will get shakiness.

Chemotherapy adds to this by giving these very same symptoms aside from the toxic side effects.  Chemo of any kind can give a patient these feelings.
The 'cancer' diagnosis itself is a reason to send anyone into an emotional tailspin.

Since the Cetuximab treatment the emotional fall out is much worse than it was the previous week.  This makes complete sense to me.  But not to 'my patient'.

My once very strong independent husband, who was THE decision maker around our farm and house has suddenly had it yanked away from him.

This week has been an emotional roller-coaster that would give anyone a pause that is a caregiver.
Last night I held my husband for over an hour while he wept.  This was the most I could do for him.

I felt helpless.

Where Flowers Bloom, 
So does Hope.

So today is one more day.

And I continue to live by the advice found on multiple cancer sites.

Thursday, May 21, 2015

Anaphylaxis Reaction to Chemo

From my journal May 20th.

Nurse Jackie recieved the new Chemo 'cocktail' to give to Rich and began to prepare to give it to him.

She explained that he would need to tell her right away if he felt funny in any way shape or form.

He agreed.  Rich was in a great mood, he'd eaten a good breakfast and a good lunch.  

In our meeting with Dr. R the day before the Oncologist Team had suggested a change in Chemo drugs because of the hearing loss experienced with Cisplatin.

The new 'cocktail' was called Erbitux.  All chemo has side effects and we read about them and discussed them at length with Dr. R and signed the paperwork to go ahead with the treatment.

Jackie laughed and Rich made jokes about having to be stuck in the chair for hours on end.  
I was busy creating a fractal called 'Cure Cancer' with my Mandelbulb 3D program on my laptop.

The Infusion clinic was busy with nurses attending other patients.  I started working on the color scheme when Jackie asked Rich again if he felt funny.

I looked over.  Rich nodded, his eyes had narrowed and looked far off. Jackie asked if he could hear her.  He nodded.  
Was he experiencing tunnel vision?
He nodded.
Could he answer her?
His head dropped to his chest.

Mr. Ewing, Richard, Richard!  Jackie's voice became concerned.

Jackie must have sent out some sort of alert or maybe even shouted for help, because in the next instant he was surrounded by nurses.  Blood pressure numbers were being read off, O2 levels.

I slammed my lid on the laptop and grabbed my stuff.  I backed out of the way and into a corner.  
Over the PA system came a call for the 'Crash Team' or whatever it was called.  The announcement was for our little room.  
I turned and watched as more people rushed in, a doctor ran in from a clinic across the hall.

Several people with giant orange bags entered and I shrunk back to stay out of the way.
I saw Rich's chest heaving, I could see he was grey and sweating.  His legs began to jerk and twitch. 
They were trying to get a response and none was coming.

I looked up.  The VA police had arrived and I was curious at first, then saw that they were making sure that the doorways were open so that the medical teams could come and go without using them.  And they were keeping anyone curious at bay.

Nurse Ronnie came up to me and asked me if I was okay.  I simply replied, "Yes."  She squeezed my arm.
She started to say something and I stared over at the mass of medical people and quietly said, "Anaphylactic shock?"

She hugged me, I hugged her back but watched.

On TV, everything happens so that you the viewer can understand what is going on.  Conversations are clear and concise.  Not so here.  I caught parts of sentences being uttered and someone repeating them.  Another voice. And another all jumbled together.

For a moment the staff backed off and I stepped forward to touch Rich. 

I glanced down at his arm where the chemo concoction had gone in.  It was bright red with huge welts on it.  
I'd never seen hives like that before.

I backed away.
The Team stabilized him and then we moved to the ED where they put him on a bed.

Dr. R appeared and I walked with him back to the Infusion clinic to pick up the rest of my things.  Both he and Jackie looked a bit distraught.  I touched Dr. R's arm and told him it would be okay.
According to the literature there is a less than .001% chance of a severe reaction like this to the drug.

He couldn't have known.  Funny thought, me trying to comfort a doctor?

Ronnie and Jackie asked me again if I was okay.

Was I okay?  I didn't know.  I had gone into my mode of emotional distancing or was it withdrawal?  I would have done no good by breaking down and causing a scene.

End result.  Rich is home today [Thursday], he feels fine.  He doesn't recall most of the incident and he did very well today.  He even ate like a champ.  We made our radiation appointment and headed home.

As soon as we dropped our stuff off in the house, we both headed upstairs to take nice long restful naps.

Wednesday, May 20, 2015

The not happy side of Care Giving.

I had an interesting talk with my stepdaugher...oh hell, let's just say she is my daughter.  For all the help and support I've gotten over the years she is as close to a biological child as I could get.

Sometimes I wonder how I'd get through things without her.  I know I can call her and blow steam off.

Last night we discussed how dramatically different Rich will be with her or the nurses and staff at the UW and at the VA.

He charms their pants off.  Smiles, agrees to what they tell him, jokes around and stops to talk at length with other veterans.  All in all what I see in public is a well rounded happy person who is dealing with cancer of the throat.

Suddenly the tables turn when we walk in the door.  He becomes angry, frustrated, and will lash out if I ask him if he is going to 'flush' his PEG tube.  He seems to get confused and can't recall what the doctors told him and WHY they told him these things.

I pull out the handy voice recorder and offer to play it back for him and he gets angry again.  
He tells me I'm a nag. He makes a 'face' at me and gives me the look.
Finally he just tells me to ...
just leave him alone.

I try to let things just roll off my back and try to remind myself that these are just words and that he is the one with the illness.

And then there it is, the little nag in the back of my brain that is mean.  I want to lash out and tell him off.  Let him have some of his own medicine.

Make your own bed, make your own meals, take care of chores, bills, if you know so dang much do it yourself.  If I can't do anything the right way then fine,...I quit.

But no, I don't do that.  

Somewhere there is an end and treatment will be done and there will be a road to recovery.
I always believe in hope even when it is difficult.

I hope.

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.

Monday, May 18, 2015

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, 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.

Sunday, May 17, 2015

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.

Friday, May 15, 2015

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.

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

Wednesday, May 13, 2015

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.

Tuesday, May 12, 2015

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.

Monday, May 11, 2015

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.


Sunday, May 10, 2015

Chemo and Radiation Break

The weekend is time for the body to rest from Chemo and Radiation Therapy.

Tuesday will be the third Chemo treatment of Cisplatin
I was reading the side effects from this drug and really it isn't pretty considering the drug is very toxic.

One of the glaring points made for combating side effects was drinking 2 to 3 quarts of water daily.  

Fluids!  I wonder how I can convince 'my patient' to consume this amount daily.
I had to work last night until midnight.  
I hate to say that it was a small relief to be with other people and to be away from the farm for 8 hrs.

Rich called me last night to tell me that he'd eaten 3 more times in very small meals.  But he was too tired to take a can of Jevity.  He said he'd eaten enough during the day.
I can see that it will be a continuing battle for him to get proper nutrition on a daily basis.

The hardest side effect for Rich to deal with from Cisplatin is fatigue.  It is all encompassing for him.  

This raises an interesting issue to think about.
He sleeps all of the time and gets up periodically.  I understand the need to rest especially with the wicked schedule we have with driving nearly two hours just for treatments.

But as he loses weight, which he is doing, and doesn't move around, he will lose muscle tone and become much weaker than he is.

I am at a complete loss as to how to 'fix' that.  
Being a Care Giver is much harder than I thought it ever could be.

This morning a neighbor will be over to put round bales into two of our winter pastures.  It will cut down on my chores for at least a few days.

We've had a break from Radiation that feels too short to me.
The Radiation to the throat is starting to show up with its effects.  His salivary glands are not producing as much saliva.  Items like his beloved daily bagel are no longer possible.
So we have moved towards English Bagels with butter and lots of homemade jelly, along with scrambled eggs in the morning.
Today's menu while I am at work will be:
Mashed potatoes and gravy for snacks.
Yogurt fruit smoothies for any time.
Cottage Cheese, Strawberries, Juice, Eggs, Soup....
Jevity...Jevity...please please take your Jevity!

My biggest issue is getting the time between farm work and our rigorous schedule to make healthy food for him to eat.

Tomorrow the week begins again.

I will be trying to make arrangements to stay overnight in Madison at least one night a week very soon.
Once our animals are moved to summer pasture ... soon...I hope, things won't be so hectic around here.

And I am not ashamed to admit it.  10 days into treatment and I am tired.  We have 5 weeks left.

Rich is doing better today, he went outside this morning when a neighbor came over to help me!
He ate two helpings of breakfast, eggs and English Muffins.
Keep your thumbs and fingers crossed today.

Saturday, May 9, 2015

Saturday ~ Can I trust him?

I've set him up with nutritional snacks because I have to go to work this afternoon.

The yogurt smoothie he had last night really helped with the diarrhea and he hasn't mentioned nausea all day.

I let him sleep in until 9 am.  I however did get him up and 'made' him take fluids and Pedialyte.

At 10, we ate scrambled eggs and English Muffins slathered with homemade grape jelly.  He said it was very good.

We shared a cup of coffee together and then he went back to sleep.

I told him at noon I would get him up for a small meal, he should have some of the peach yogurt stuff I'd made.  

Yep, he agreed that it would be a good idea.

I came in just after noon and he was up.  Good thing, I thought.  I grabbed the smoothie and started to fix it for him.
He grumbled at me and waved me away.

"I have a fever, I'm cold." He grumbled.
I whipped out the thermometer and took his temp and showed it to him.

"Fine," he said as if I'd just insulted him, "I'm still cold."

I got him a flannel and shut the windows telling him that yes, it was a bit chilly and I'd turn the heat on for him.

He got up and looked out the window at the cattle.  

I asked, "Do you want to walk out and see them?  The calves are separate from the moms.  The apple trees are pretty and everything smells nice."

"No, I don't want to walk a f*cking mile, no I don't want your peach stuff."  He turned and walked to the pantry and rummaged until he found a Hostess cupcake.  He ate two while glaring at me.

I held up the lunch we planned together only two hours before.
He shook his head.  

"I'm sorry," he said, "You don't know what it is like. I don't mean to" he waves his hand in the air.

I replied,"No I don't know really. I'm not walking in our shoes."

"I'm just so tired.  I can't do what you want me to do.  I just can't."

I watched my husband go up the stairs and then went and tucked him in.

"Will you promise me to do one can of Jevity tonight through the feeding tube?"

He shrugs, then mumbles, "Yes."

And I wonder.  I'll be at work.  I'll have to chore at 1 am. I look out the kitchen window.  Perhaps the cattle do look as though they are a mile away to someone with no energy.

So I pack my dinner to take to work.  I feel guilty, like I need to be at home to nag him into drinking fluids and eating nutrition.  He wants to get better he says. 

I want him to get better. 

Maybe he will have the Jevity.  He is supposed to every day.  He refused it last night claiming he'd eaten well.

I guess I'll know when I get home tonight.

Come Tuesday, our next day of Chemo Infusion will be a telling one.

I wish Nurse Ronnie were here, she wouldn't put up with anything from him.

He is angry.
He is sad.
He is frustrated.
He feels sick.
He sees no end.

I want the strength to get him through this.

I want to trust that he will follow through and use the PEG tube we call Miss Peggy.

I want him to remember that at the end of this, the tumor will be gone, it has already shrunk.
But perhaps you can't see that when you are miserable.

Just once I'd like him to try and fight back at this awful thing called cancer.
Get angry and decide to try everything to make yourself better.

I have no choice, I have to trust him to do the right thing.

Friday, May 8, 2015

I'm Counting the Days Now...

Maybe I shouldn't count days, maybe I shouldn't look forward to when I can have a day for myself.

Yesterday was another extremely long day.
It started well.  While I was doing chores, Rich started to feel nauseated and instead of taking his meds he waited until I came in.

Another side effect from Chemo hit him at the same time. Ewww...Diarrhea.
Not a pleasant subject but if we are talking about Cancer and everything associated with it, ... there it is.

I called the Infusion Hot Line and was told to give him his nausea meds and Imodium for the diarrhea.
I'd done the nausea meds and had argued with Mr. Patient about taking them.  After talking to the nurse it got...


We were nearly late for our appointment and but the bouts of diarrhea held off for 4 hrs.  He should have had another tablet after we got to the UW. Bad me, for not being able to keep everything straight and do all the driving and navigating from one place to another.

Mr. Patient and I got directed from the Infusion clinic to the ER at the VA.  Fluids and anti nausea IV meds were given and there was a kind 'lecture' about keeping up on fluids AND the feeding.

Blood counts dropped from yesterday so it will be interesting to see how it is come Tuesday.
Our day spent at the UW, the VA ER, and travelling was from 9am to 6pm.

After we got home Rich went directly to bed.  I was exhausted but went out to do chores anyway.  Heck they needed to be done.
The yard is getting too long and shaggy.

I fed the animals and tried to figure out how quickly I could move everyone to summer pasture.  It would cut down on my work by hours each day.  And as tired as I was getting, that would be a great thing.

Rich had his first IV tube feeding.  Actually it is just a gravity feeding to his PEG.  He had been a pretty poor patient about taking extra nutrition through Miss Peggy.

As nurse Ronnie had said, if he didn't start being a bit more proactive in his eating and nutrition, they would admit him to hospital.

Naughty me, I thought ... in the back of my mind.
Oh!  Really?  Please do!  I could use a couple of days to tend to all the things on the farm!

My Patient-husband can be a real grump and actually he has reason to.
He keeps telling anyone who will listen that he sure didn't bank on being knocked down by the Chemo like this.
Side effects from the Radiation Treatments will make their presence known soon.

The cancerous lymph node has gone from 3cm to 2cm.  At least that is what the doctors are saying.  This is good news to hang on to.

I checked the calendar and counted it up ~ after today:

25 more Radiation Treatments.
5 more Chemo Treatments.

Yesterday's lessons.  
Have pull up adult diapers on hand in case...
Make sure patient takes his anti nausea pills and stays with it.
Make sure patient eats.  Make sure patient takes Jevity.
Pack your car as if you were a pharmacy and add water bottles, clothes, and notepads.

For the CareGiver:
Go to bed.  Sleep. 
It is normal to be frustrated.

All the caregiver information I read is to get someone to come in and give you a break.
This isn't really possible when your day is taken up by travelling and farm chores.  
But I will be addressing those issues very quickly.

Today is Friday.  I hope it goes well.

Thursday, May 7, 2015

We've Got Your Back!

We walked into the waiting room for Radiology.  Our trip to MAD City was quiet.  Rich slept, he was miserable but quiet.
After his treatment, we saw Dr. W, who felt the lymph node and commented that it was already receding.  This was great news!  I felt ecstatic.  My husband-patient however was miserable still.

Dr. W mentioned that by next week Rich's mouth was going to start feeling the effects of the Radiation Treatments.

We made it to the VA with time to spare.

Rich's labs were good, his white count was fine...
Then we entered the Infusion Lab and when Ronnie the nurse asked Rich if he wanted water and went to get it, I followed her.

I told her what had been going on.  I told her about 'nausea-not nausea argument' that we'd been having. 

The way he got impatient with the Jevity and pushed it into his stomach and then the horrid diarrhea that he was experiencing.
I also mentioned that I thought he was hitting a major block of depression.  "Well who wouldn't be, right?" I asked.
Ronnie told me that she'd address everything with him.

First thing she did was weigh him and then question him about what was going on.  She was like a drill sergeant with her questions.  

Finally she leaned back and said to him, "If you continue like this I will admit you to the hospital.  I can do it today, if you like."

Rich shook his head.

Then Ronnie carefully explained that the anti nausea meds that are given intravenously with the chemo treatment last for 72 hours and everything he was telling her was right on for the nausea catching up to him and his refusal of taking his nausea meds only made things horribly worse.

She told him in no uncertain terms that he needed to have one can of Jevity EVERY night this week.  Starting next week, two cans.
Any meals missed = one can of Jevity.
She arranged for us to receive 'Kangaroo' bags to put the Jevity in and hang from an IV pole.
Ronnie then explained that Jevity needed to drip in slowly to his stomach because if it was 'pushed' in, it would cause severe diarrhea.
Rich's impatience had contributed to his awful bout with that...

Ronnie suggested setting up the pole and bag, kicking back on the couch and watching a movie while his liquid 'gold' dripped into his stomach.

Ronnie went on to say that he needed to get out every day and take a small walk of some kind.  He needed to have fresh air and see the clouds and sun.

One word about Ronnie.  She is kind, sweet, and overflowing with compassion regarding her patients, she cares for them and it shows in her eyes.  She knows how to be a hardass when it is warranted.  And she knows how to deal with Veterans. 
She is priceless.

She told him that IF at any time he couldn't eat, or he couldn't control his nausea, that HE should call the Oncology number we had 24 hrs a day and a nurse would get back to him.
Not only that, we were next door at the UW Carbone Cancer Center 5 times a
IF he felt ill any day, come immediately to the Infusion Clinic and they'd make room for him.

What we had been going through could have been avoided.

Boy, did I feel like a dumb-ass.  I told Ronnie that.  She shrugged and told me that I was normal.  This cancer treatment thing had a learning curve.

Rich had been dehydrated and sorely needed the IV hydration that he was given first.  He really perked up with that and ate pudding and drank juices and ice water.

Ronnie was busy making phone calls around the VA and even got us in to see a Mental Health Counselor before we went home.

We made the trip home after an 8 hour day spent at two hospitals and clinics.  

One of the things I won't go into here is all of the different medications Rich is getting.  Each person is so different in what kind of cancer they may have and what will be given to them.
As we were told by the Nutritionist yesterday, there is such a delicate balance of trying to make the patient as comfortable as possible during treatment.  Medications would be changed and adjusted according to how the patient was doing.

It may also be important to bring along a voice recorder so both the cancer patient and the CareGiver can review what was said.  I have found that to be priceless.  I haven't run across a nurse or doctor yet who wouldn't let me use it.

We spent an hour with a counselor who helped address the Depression issues.  

Day 6 of radiation completed.  Day 2 of Chemo completed.
8 days into treatment.

Most of all, don't lose hope and know that if you are getting treatment, there are people who will have your back.  I imagine this is true for nearly any oncology clinic.
I think this was the most important thing I learned yesterday and it was such a relief.