They will get along

Today we met with a Social Worker, a Resident Doctor Pete, and, Dr. LaConte.
I had a bit of a laugh when the Social Worker handed me her business card.  Sarah Rogers.
Let's just say it is a family name and Rogers was my maiden name.

Dr. Faris, true to his word was there.  He took a stool and sat quietly in the corner as Sarah and the Doctor Peter talked with Rich.

It was somewhat like an interview to see what issues regarding his health he would like addressed.

Sarah was direct and asked fantastic questions of Rich about regarding faith, spirituality, and medical concerns.
She was able to get Rich to give her a lot of information.

I'm not going to repeat our 2 hours with the doctors, but I will say I used a digital recorder so I can review the meeting. 

Struggling with lingering side effects of the radiation and chemo were his main complaints.  'Finding the new normal' was a key phrase.  Rich wanted to find the old normal.  His wish is to get back to what he used to be.

I'm not sure that is ever going to occur.  But that is my unspoken opinion and I will support Rich's desire to get back to the old normal.

Another main complaint is his balance.  We spoke at length about that today.
I think I haven't realized how much the loss his ease of footing has effected his mental well being.


I know Dr. Faris expressed how interesting it was to sit back and observe and not have to be involved in the conversation.


After nearly two hours of talking we are going to work on the balance issue first as that seems to be a key to making Rich feel more comfortable.

Dr. LaConte thought that Physical Therapy may help. 

Ear/Nose/Throat will be looking to see if there was any inner ear damage from radiation therapy 'scattering', as well as a follow up to check where the tumor had been on his tonsil.

There was so much covered by everyone it will take me listening to the meeting at least one more time to make some more sense out of it.

On our way home Rich talked about how much he like Dr. LaConte and how he felt really comfortable with him.

"I think we will get along just fine."  Rich said.

Conversations

From October 13th's 'Journal'

Conversations with Rich can sometimes be pretty difficult.  He is not always open to saying what he is really thinking.
He can be a very difficult person to read.


Dr. Faris asked how he was doing.  Of course Rich answered "ain't worth a shit."  This is his usual tag line and has been since pre cancer diagnosis.

Dr. Faris replied, "Help me understand, that fellow which is you...I hear up the hallway..." he gestures to the hall outside his office on the Mental Health floor of the VA, "always sounds robust and happy.  I can hear your laughter when you stop and talk to Chris in his office."

I sit back and wait quietly for Rich to answer this.  I've noticed the same.  While he is 'visiting' with VA employees, or for example other folks, he gets caught up in the conversation and so many people have commented 'what a great fun person he must be!'  

Rich is quiet for a split second.  "I'm pretending," he replies. "I'm not happy, I'm just acting."

My brow furrows and I try to watch Rich and Dr. Faris at the same time.  Pretending? 
I can't stop myself.
I blurt out.

"I believe then that you need to receive the Academy Award for Best Actor in Any Situation. You didn't have a good time at Jersey Valley?" 

I am referring to meeting with another couple the weekend before and how my husband and my new friend's husband had so much in common as did the 'girls'.  
Of course the ice breaker had been her beautiful red Mustang that both of our husbands- who had gone through incredibly nasty treatments for cancer- admired.

Rich shrugs.  I am floored.  On our way home we'd talked about how much we enjoyed our visit with Sue and Nick and their dog.  I look over at Dr. Faris who is watching carefully.

"So...," Dr. Faris says. "Richard, you never enjoy engaging with other people? Is that what you are saying? You are then the best actor in the world?"

A big sigh comes from Rich. "Yes.  I'm just acting out trying to be normal."

"What gives you satisfaction or peace?  Something like fishing?" Dr. Faris watches.

"No. Not even then, but I love fishing." Rich looks straight at Dr. Faris.  "My only peace will be found when I am dead."

I want to stand up and walk out.  I am shocked by his statement and I want to ask.  "Wow, don't I mean anything to you, doesn't your family mean a thing to you?"  I'm pretty sure that isn't exactly what he meant. He goes on and on about the grand kids, his daughter, my older son and my youngest son's children.  I know he is not pretending when family is around.  I know this deep within my heart and soul.

I wonder if my bewilderment and anger show.  I then remind myself that I am dealing with a man who has just gone through a very tough cancer treatment and suffers from PTSD.

I am left wondering if he truly believes that statement or if that is just what he feels today.


~~~~~~~~~~~~~

Today we visit with the Palliative Care doctor, it should be very interesting.

The Day After the Pet Scan Uh-ohhh

Dr. Witek called Rich the day after the PET scan.

"Our techs were going through your PET scan again and I need to know Rich if you've been having trouble with your eyesight?"

Rich said yes, but we of course hadn't linked any vision changes with anything other than the possibility of normal aging eyes.  The eye doctor had found cataracts too.  We'd told Dr. Morris about that the day earlier and he said that radiation could increase the time frame for cataracts if a person were to get them.

Apparently 'they' found 'something' in the occipital lobe of his brain.  The something was something they wanted to identify very soon.  Dr. Witek had put in an order for a CT scan of the area.  The 'techs' had wanted an MRI but Dr. Witek opted for the CT scan as Rich is very claustrophobic.

There was a knee jerk reaction in our household.  Our good news had turned into a 'Something'.  An unknown.  

We had to go to the VA for Dental, Swallow Clinic, and Mental Health yesterday.  Rich's Dentist did prep work for putting in some teeth to replace those he lost before the radiation therapy started.  Since the Dentist can't place a post in the jaw for partials, he had to make a work around. Radiation in throat and head makes the jaw bone brittle and no teeth can be pulled for about two years without causing huge issues.

Our appointment with Dr. Faris was perhaps the best appointment of the day.  Dr. Faris deserves a nod and some applause as he probably went way past his quitting time to hear Rich out.

He let Rich talk on and on about the Old Days and how he could do anything and everything.  His main complaint is of course how terrible things are for him because he has no energy.  After a long while Rich said out loud, "Maybe I am just getting old and I can't do the things I used to."

There it was, out in the open at least in my mind.  He is not 19 anymore nor 10 foot tall and bullet proof.  He admitted it.
I think it can be very difficult to face the fact that your life is not as it once was.


Dr. Feris discussed Palliative Care for Rich and he actually considered it. Palliative Care is not Hospice but is defined as special medical for people with serious illnesses.  It involves working with a special medical team that focuses on providing the patients with some relief from symptoms and stress from serious illness. The goal is to improve the quality of life for both the patient and the family of the patient.

I asked Rich on the ride home why he was always very negative when people asked how he was.  He didn't really have much of an answer.  I'm of the belief that if you always say you are not well, you will be unwell.

As for the Uh-Ohhh?  It is there and for the moment I am going to cope with it in the only manner I can.  Hope for the best, prepare for the worst, and don't freak out.  No knowledge is more fearful than having knowledge.

I know it is weighing heavily on Rich's mind.  But he told Dr. Feris yesterday that he didn't care, he was not afraid of it after all he has gone through.
We can all put on brave fronts in front of other people can we not?

Impatient Patient.

Well as Rich recovers we hit small set backs and tiny steps forward.
For him though it doesn't feel as though he is healing at all.

Part of the issue is our very hot and humid days.  They sap the strength out of patients who have had radiation treatment.
No matter how many times I remind him of the fact he remains unconvinced.

In his words he wants to recover and be 'better than before'.
However, given his age and health condition prior to treatment, that is a bit of a stretch and one he is not willing to accept.

We had several appointments this week at the VA hospital in Madison.  

His eye glasses were ordered which are good, he is having some trouble with his vision.  However we couldn't get any answer regarding his cataracts and what was the criteria for that.  The technician just stated that he would get a follow up appointment in about 6 months.

Pardon my skepticism, but since they were not able to locate his prescription from the 'outsourced' doctor, I know it will be up to us to follow up.
The eye clinic apparently is so overwhelmed that they cannot keep up with their services to the veterans.

Being a patient is a full time job, being the care taker of a patient sometimes seems more than full time.

We will be going to see Dr. Feris once a week for a while to try and work with the depression issue.  Dr. Feris is incredible and really knows his stuff.  However Rich has to cooperate a bit by not concentrating all of the time on 'the bad' in his life.

I'm not in his shoes, but I can see that a more positive attitude at this point is what he really needs and I don't know how to help him find that.

We were given some homework which I felt was rather helpful.  
I brought out the papers the last night and asked him to tell me what happened today that he felt pleasant.

Rich gave me a look.  And said, "Put that away, it is stupid, and I'll do it if I feel like it."

I suppose from my view point, I get discouraged with that attitude as it won't assist him in getting better at all.

When we talk about the Grand children or time spent with the kids, he positively lights up.  So I know that not everything in his life is negative.

But I tire of the same answer every single day.

"How are you?"
Grunt and a dirty look.
"Not worth a sh*t," is the daily mantra.

He is an impatient patient, looking for a fix that isn't there.

Dr's Feris and Cordes still feel part of the issues are stemming from biological problems and no mental health medication is going to fix that.
I agree with them 100%.

Goal.
Get Rich off the farm and engaged in doing something enjoyable.

Throat Cancer a bit of a review

Today Rich sort of had a pre-celebration regarding his radiation treatments.

Only one more to go.

This is a photo from his treatment room ... he is in his mask and the tech put his sunglasses and hat on him.

On Wednesday, April 29th 2015, Rich had his first radiation and chemo treatment.
That was 32 treatments ago.

It was inconceivable that we'd ever see the end of radiation or chemo.  But now that last day is looming on Monday June 15th, 2015.

Even last week we felt like the 'end' was still so far off.

Some things to remember about radiation therapy.  The side effects don't quit on the day the therapy quits.

The side effects can show up later in life in many various ways as explained in detail by Itzhak Brook MD in his book My Voice: A Physician's Personal Experience with Throat Cancer.

If you read the book or review it at this link you might wonder why on earth would anyone want to go through cancer treatment at all.
It is pretty simple.
The patient wants to live longer.
It is simple.  Without the treatment the options are only one.
A slow and painful death.
We go for the treatment to up our odds, to gain some years with loved ones.  Or because we feel deeply that we can be cured and look back on the treatment as a huge hurdle in life.

How do we feel today?  Optimistic.  We may or may not have 'beaten' the odds. We don't know what the eventual outcome is, but we are looking for it to be positive.

This journey is not over.  We can't just wave goodbye to a several weeks of treatment and pretend it never happened.  The whole process from the diagnosis through all the ups and downs of chemo and radiation has changed us.

It isn't HIM who has cancer.  We know it is him, but it is we that went through it together.  
The word we includes his doctors, the nurses, myself, his daughter, his son in law, the grand kids, and yes, even the dog.  

Neighbors who have helped with meals, mowing yard, coming over to move round bales, my eldest son who came out and worked to help make fencing and clearing the area under the electric fence with a weed eater.
My youngest son, who sent photos and videos of his children to make us laugh.
Our dear friends who came to visit from Missouri and brought their newborn to cheer up Rich...
the list is endless and keeps expanding.

Gary, the broken down old soul who washes car windows at the gas station we stop at day after day.  A nameless person until Rich and he shared cancer stories.  Gary ~ the guy who gave me a hug when he thought I needed it.  And yes I did need it.

Our journey is far from over.  We have cleared the first hurdle and feel a bit more stronger to try and get over the next one that is tossed at us.

Today we fight the radiation burns on his neck.  I gently rinse water to slough off the dead skin.  I reapply Silver Sulfadizine carefully. This process can take up to an hour each time.

We get tired and short with each other.  We laugh and hug.  I tuck him in at night.
Sometimes we walk around each other like two cats preparing for a fight.
Other times we walk together holding hands.


So we have hope and we have love.  We have changed in some ways.
And we remain the same people in many other ways.

It is hard to explain.

But we look forward to each new day.
Because we can.

No More Chemo?

Promptly on Monday the flurry of appointments began.

The hospital had done a CT scan of their own along with an echo-cardiogram, X- rays, and many blood draws.

People came and went from his room.  We commented on the fact that we felt the door should just be revolving.
The Neurologist was leaning towards a TIA or what they call a 'mini-stroke'.

No progress was made other than testing and more testing on Monday.  

Tuesday rolled around and when Stephanie and I got to the VA we found that Rich had been whisked off to his appointment with a Dr. Faris who specialized in Psychology.

Steph stayed at the room while I ran down to Mental Health to see if I could catch up to Rich.  
I found him sitting in a wheelchair with his green pj's on.  He looked sad and a bit displaced.

When Dr. Faris came for him, I wheeled him into his office.  Rich asked me to stay and Dr. Faris asked Rich if it was okay that I be included in the meeting. Rich nodded and said something to the affect, that I was always included in all of his mental health interactions.

Dr. Faris works with Veterans who often have major health issues along with PTSD.  Apparently he works quite a bit out of the 'cancer' clinic.

I sort of secretly wondered why we hadn't been seen by him from the get go of the cancer diagnosis.

We talked about health care, we talked about what Rich wanted and needed and we even talked about how the cancer treatments had taken over his life to the point where he felt he had absolutely no control over his life anymore.  How he felt that he was just priming for the next chemo treatment and wondering how it would affect him.
Truly this regime of 33 radiations and 6 chemotherapy infusions done at the same time was brutal to anyone.  Emotionally it is tolling to those who don't have mental health issues.

I raised a question which had been on my mind.

"I wonder if you have had enough Chemotherapy to be effective for your treatment?  I wonder if not having any more chemo would change the quality of your life?  Is this a question you would like to ask your Chemo Doctor?"  I asked Rich, while holding his hand.

Dr. Faris thought this a valid question and could not offer an opinion on it but said it wouldn't hurt to ask.  Sometimes the quality of a person's life outweighs the treatment that is being given.

Stephanie and I had talked about this in great length on our trips back and forth to Madison since Sunday.  
When was enough enough?

The past 3 weeks had seen an Anaphylatic reaction that ended in hospitalization with a severity of 4 out of 4.
A mental health breakdown which resulted in a 4 day stay -- and thus this meeting with Dr. Faris.
A TIA that he was currently being tested and run through the mill for, with another 4 day stay at the hospital.

Dr. Faris let Rich and I discuss the issues and weigh them.  Rich brightened at the thought of no more chemo.

Our next appointment was with Dr. R. the chemo/oncology doctor.  I'd grown to respect and really like this doctor.  He was extremely compassionate and always prepared to answer questions.  He was supportive of using a voice recorder so we could review our discussions.

Dr. R came out to the waiting room and ushered Stephanie, myself, and Rich into an exam room.
That was a bit unusual in itself.

Dr. R, looked at Rich then at us.  He said he'd just reviewed the latest notes.  He looked at all of us and then address Rich.
Rich was exhausted and tired of being rushed from one appointment to the next.

As a family, Steph, Rich, and I asked some questions about the continuation or end of chemotherapy.
We talked at length and Dr. R said he had no issue with stopping chemo at this point, Rich had done over half of the therapies and with all of the reactions he'd had and other health issues, he felt that this would not be a terrible course to follow.
The tumor in the lymph node was gone and he felt that the one in the throat was nearly gone.  The chemo along with radiation had been working very well, but there was the patient's comfort and quality of life to consider...ending chemo?  It may or may not change the final outcome, but...

Of course that had to be the patient's decision.

I held on to Rich's hand and Steph was close to him on the other side.  Rich felt that an end to chemo would be in his best interests mentally and physically.

We would continue with the radiation treatments and then Dr. W the Head and Neck Oncologist from the UW along with Dr. R would then put Rich on monitor 'mode'.
After he had healed some from the last radiation, they would follow up with a scan and then continue to monitor Rich.

I can say this.
This decision immediately showed up in Rich as a catalyst.  His mental outlook, his physical being began to show immediate improvement.

No more chemo?  That was good with us.
In fact it was the uplift that Rich needed so badly.

And it showed as he hammed it up for me just before being released from the hospital.

When we got home that night, Rich used his cane and we went for a walk to see Speedy, the new bull calf.

This was a first.  He had energy and a positive outlook for the first time in many weeks.

No more chemo was a good decision, no matter the end result.

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!

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.

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.

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.


~~~~~
Addition:
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 ~ 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.
Normal.

"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 be...like..." 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.

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.
Bingo.
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 week...so...
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.

Re-thinking the situation

During a discussion last night with his daughter on the phone, I said "He is acting just like he did when his anti depressants stopped working in 2012."

Bingo, the light went on.  Today is day 6 of Radiation and day 2 of Chemotherapy.

Both combinations are sapping his strength which he never imagined possible.  
Major Depression along with PTSD is going to make this 6 week long treatment much more difficult.

His condition will generally deteriorate unless I get the proper help by the VA.

A major blow to his mental health was when his old trusted doctor moved to New Zealand and his new doctor after one meeting decided to move onto another job.

He feels abandoned by his mental health doctors.  I was so concentrated on the Radiation and Chemo treatments that I was missing part of the puzzle.

Communication with Rich has dwindled with me. I only seem to be trying to get him to eat or take his medicines at the right times.

With me struggling with the farm and work issues, I failed to see the sudden total withdrawal from life.  His attitude is getting more and more withdrawn ... now that I've opened my eyes and mind, I can see that.

Let us hope that today's long visit bring some much needed help, hope, and understanding.

The Difficult Patient.

Today Rich had a very hard time with his 'gag' reflex.  He wasn't able to put in his mouth pieces for the Radiation ... Tomo Therapy treatment.

They ushered him to the waiting room while a tech went to trim the mouth piece so he wouldn't gag.

He got through his session but literally splayed on the waiting room couch.

Soon enough, we went to another waiting room where our male nurse ushered us into a room.

He lectured Rich on using his anti-nausea meds to keep the nausea at bay. This was day two of someone telling him to take his meds.

He nodded as if he would follow directions.  The nurse also told him how important meals were.

Yep, he knew that.  But someone needed to make him feel better.  

The male nurse from the RAD department explained that more than likely he was feeling side effects from his chemo treatment.  The side effects from this week's radiation therapy would effect him next week.

I indicated that he had not been eating and of course Rich argued that HE had eaten.  And that he had 2 shakes last night and a bowl of cereal this morning.

I sighed.

Rich had slept most of the way in to MAD city and all of the way home. When we got in the door he mumbled that he was going directly to bed.

I insisted on his nausea medication and then his normal noon time meds.
He shrugged and headed upstairs.

I brought them to him and he took the meds.  I checked the fluid level in his CPAP, tucked him in, and proceeded to do the things on my "To Do List".  
This included getting him a wedge pillow, some Boitene rinse for his mouth and making phone calls.

Okay, this may sound a bit selfish, but I went to visit my dog at the Chiropractor's Office.  Damn, if Morris wasn't into his job. He was busy greeting patients and walking them to the door when they left.

He greeted me and then went back to 'work'.  He is in his glory and so is my good friend and wonderful Chiropractor Dr. Bjerke.

I was almost annoyed that my dog was Mr. Sociable and treated me as if I were one of the patients.
I'm smiling as I type this.  We should all be blessed with a wonderful dog like Morris.  I'm glad he is busy working and not stuck in his crate all day.

I worked at chores in the light rain and even began to set up things for moving animals this weekend or perhaps next weekend.

Tomorrow is Chemo Day.  Since my husband will be attached to an IV for 4.5 hrs I can talk to the nurses to see if they have any helpful hints as to 'how' to convince Rich that he needs to eat no matter how tired he is.

Eating and nutrition is the key to getting through Chemo and Radiation Therapy.

And this cancer has over a 90% cure rate.

Prepared for this ride?

Our weekend was busy.  We had company for which I am grateful as Rich loved holding Gunner who is a newborn.

Here is the Cliff Note Version of our last few days since Friday which went well.
~~~~
Company.
Rich wore himself out being the 'host with the most'.  He took our guests to lunch and stayed up most of the day when he should have been resting.

That evening he said he'd do chores while the mom of the children took her wee ones and went to Walmart in town for diapers.  I took her husband out for a lesson on long exposures.
I enjoyed that immensely after working all day.

We came home and NO Rich.  He was in the bathroom. He said he'd felt dizzy doing chores, weak, and thought he wasn't going to make it back to the house.

I helped him to bed and get undressed.  Later I brought him water when he said his mouth was so dry.  I tried to give him some Biotene to rinse with as it was prescribed for this very reason.

Let us just say that his extra activity and his treatments knocked him totally on his arse.  
He kept telling me that he felt strange and he couldn't describe it.
Then he would say he felt like if he ate he might throw it up.  I told him that was nausea and to take his nausea medicine.  He flatly refused.

Sunday wasn't much better but our visiting friends said he ate cereal and an egg scrambled but nothing else.  He was drinking water though.
~~~~

Monday.
We spoke with the Social Worker for Radiation Therapy. Jackie told Rich that he'd lost 6lbs over the weekend and she was concerned.
We discussed the weekend and she said that food having an off taste was fairly normal for this.
She recommended that he start taking his anti nausea meds and begin PEG feeding with one can per day.

Let's cut to the chase.
He ate a good lunch.  Then spent the rest of the day in bed.
I got him up to eat.
He came downstairs and told me he wasn't eating.

I made a chocolate malt with 'Ensure' mixed in.  He drank two glasses.  Then announced his intent to go to bed.

I brought out the Jevity and said that he needed to have one of those before bed. 

The look of anger on his face was a new thing for me.  He swore and then told me to 'get on with it'.  I helped him pour the liquid into the tube and then held it.

He kept getting more angry, the 'liquid food' wasn't going down fast enough for him.  Patience was not something he had very much of.  He pushed it down and then told me to put the rest of the Jevity in the fridge.

I dumped it and tossed the syringe.  Okay, let me rephrase that.
I didn't just dump it...I dumped it and then threw it as hard as I could into the recycling bag.

If he'd had the strength, he would have stomped up the stairs to bed.  I helped him undress and turn on the CPAP and Oxygenator.

I asked him if he was going to take his night meds.  He waved a hand at me.

Really?  Is this how it is going to go?  He will be sweet and nice when talking to the nurses and mean and cranky when we are alone and refuse to really do what he is supposed to?

Day 4 of Radiation.  Day 6 since first treatment.
And I wonder truly if I am prepared for this ride.

First Day of Chemo and Rad

What a wonderful daughter Rich has.  Stephanie came Monday night to our house and then stayed over night and helped me with chores in the morning.

She then took her dad to the MAD VA and went with him through all of his appointments.

Chemo took hours to do and she took notes for me, asked questions and even updated our Gmail Calendar with new appointments.  What a fantastic way to share information!

After his long day, she took him home to her house.  They met me at the UW Carbone Cancer Center today where I picked him up and brought him home.

Our schedule for Rad will be slightly different each week, so no set time...it will change each week. 
Next week the times vary at least 3 times.

Rich had a medication in his Chemotherapy that is for nausea.  One of the side effects is that it could make the patient euphoric or a bit moody.
Oh wow, talk about having someone who is ... like on speed!  He talked volumes louder and was almost obnoxious about telling me how to drive.  He rambled on about things ... he was talking faster than I was driving.

Yep, our first chemo experience was enlightening.  Next week I'll talk to the nurses in the infusion clinic and ask them if this is abnormal.

He had his second radiation today and had forgotten to take his anxiety meds. He said it was the longest 15 minutes of his life.
We stopped to eat lunch at Grandma's Cafe in Arena, WI.  By the way, if you ever travel Highway 14 from Madison...stop there.  It is good food and served right!

We'll be up at 5:30 A.M. tomorrow to get the ball rolling.  Monday through Friday we have appointments at unexpected times to be determined by the VA and the UW Carbone Cancer Center each week.

One of the best things I did is to have Rich sign a sheet giving the VA permission to share medical information with Steph about her dad and let her have input on appointments.

Yesterday Steph took her dad to his first appointments for Chemo and Radiation. I had the day to myself.  I had a delivery, a doctor's appointment, and I treated myself to a hair cut.  
Then I sat outside in a lawn chair after chores and listened to the birds sing while Morris wandered around.  

Life is good ... considering.

Anger Emotions Tired Changing

Pretty much, the title says most of it all.  We are going day by day now, one day at a time.

Treatment was supposed to start on Monday.  I made phone calls to the Coordinator of Care at both the VA and the UW Hospitals and they both concurred on this.

We were told that we'd get called by Thursday or Friday at the latest. I spent Thursday doing things around the house.  By late Thursday I took a short walk into the woods while Rich slept.  

His surgery from Monday was still bothering him.  He couldn't pick heavy things up or bend over easily, but we were learning how to flush Miss Peggy the PEG tube.  It looked to be healing quite well.

By Friday morning I was tired, so bone tired that it felt like it took all of my strength just to do the chores.  I didn't mind the rain.  But I did mind feeling as though I were dragging and elephant along through the mud with me.

I'd been reading the literature sent to me by the Caregiver Coordinator from the VA.  I was suffering some Caregiver burnout and here we hadn't even begun to start the 'tough' stuff.  How in the heck was I going to make it through weeks of Radiation and Chemotherapy and be kind and understanding?

Could I do it?

We'd already been seeing that in the fact that both Rich's emotions and mine were running wild circles around each other.  He'd be up, I'd be down. 

I wondered if I was truly going to be up to this task before me.  We still had no true idea of what we were getting into.
We'd heard a lot about 'how tough' things were going to get or 'could' get, or 'might' get.  It all depends on the individual.

Enough was enough.  Rich asked me if I wanted to go car shopping.  I jumped at the idea as it was better than sitting in the house thinking gloomy thoughts on a gloomy day.

We went to LaCrosse and took care of our transportation issues. We have been frugal folks for years and we had decent vehicles but the Subaru was having mechanical issues.  In fact it seemed as though they were going to be non-stop at this point.  Fixing it completely would be about as much money as it was worth.  It was 13 years old.
Rich did something I never expected him to do ... not ever.
He bought me a brand new Red XVCrosstek made by Subaru.
He made it clear that he was buying me a new car.

It may seem very imprudent to those who don't know us.  But traveling 190 miles a day was going to be too iffy with our aged vehicles.  

We were both exhausted when we got home from LaCrosse Friday night.

This morning I was getting ready to go outside and do chores while Rich was talking to his mother on the phone.  She must have asked something about the PEG tube.

Rich replied that he had to flush it ... then he had to do some more reading about it.  We both had some questions for the doctors on the follow up appointment.
He then said, "Well she doesn't help me at all, she says I'm on my own, ... ornery old heifer! Yep, here I am, left like an old sheet hung on the line to dry..."

I closed the door and stepped outside.  I was fuming.  How dare he say that?
I did the chores and filled water tanks along with buckets.  I moved bales and prepared everything for the evening chores.  I had to go do a 12 hour overnight shift and he was going to have to work through chores on his own.

When I got back inside, I'd calmed down a bit.  I was still ready to bite someone's head off.  But I held my tongue.

Rich picked up the menu from Iguana's Mexican Street Cafe and asked me a question about what pico de gallo was.  I gave him a stare, it could have probably peeled the paint job off from our new car that we would pick up Monday night.  
Iguana's Mexican Street Cafe is owned by the fellow who sold us the car, it is his and his wife's business.  

He must have figured it out.
"What?"
I grimaced, "Do you have to be so mean about it?  I don't help you at all? What about what I do here, what about," ... I tossed my hands in the air.

His mouth formed an "O".  Then he nodded.
"I'm sorry," I said, "I just with all of this..." I shrugged.
"I know and I hope you know that I was joking, I was kidding."  He thought for a second then said, "With what we are going through, I'm guessing we are going to go through a lot of this.  Boy, it is going to be hard."

We.  We are going through.  That was the key.  It wasn't just him, it was us. In a way it was changing our relationship and I think for the better in some ways.
We were beginning to think more of each other's personal feelings.  We were recognizing our ups and downs.  We were changing, our marriage was changing.