Tuesday, October 27, 2015

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.


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.

Wednesday, October 14, 2015

4 Month Visit with Hematology Oncology

We went to see Dr. Faris first who has been a big help through out the treatment process.  He is a psychologist.

Rich was pretty insistent on getting signed up for Tai Chi, as he feels this form of exercise can help with his balance and his psychical well being.  It builds strength and balance and so much more.

With that done we saw Dr. Rahim.  He went through Rich's chart and we talked a bit about how things were looking good and Rich was now in the monitoring stage.  There would be a follow up with ENT -- Ear Nose Throat, and we'd see him again in 3 months.

We told him that we were going to meet with a Dr. Loconte who is in charge of Palliative Care and Dr. Rahim nodded, he believed this was an excellent choice for us.  Dr. Faris planned on sitting in with us on the first time we see Dr. Loconte and Dr. Rahim said he would be dropping in also.

What exactly is Palliative Care?  Well it is not end of life care, that is called Hospice.

What Is Palliative Care?

Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

We thought about this decision and felt that is was a good fit for Rich.  Dr. Faris had brought it up a while ago and we've talked with other health professionals [nurses in particular] about it and they said it was a great program.

As Rich told Dr. Faris yesterday, "Look, we are all going to die.  I just don't want all the decisions taken out of my hands and feel lost like I was during cancer treatment."
Dr. Faris understood.

With Dr. Rahim, Rich said, "If that cancer comes back, I am not going through treatment again."
Dr. Rahim shrugged and put a hand on Rich's shoulder and nodded.

"Mr. Ewing, let's cross that bridge if it ever comes to that? Okay? I will be checking in with you with your visit with Dr. Loconte."

So onward our care goes.

Saturday, October 3, 2015

One day at a time.

Finally after weeks and weeks of seemingly never ending appointments we have gotten a week of 'peace'.

I took some time to be unavailable to work.  No, I do not get vacation nor do I get paid.

This week I got the Subaru in for a oil change, tire rotation, and over all check up.  The vehicle continues to perform well for us.

I was able to take Morris to the vet to get his overdue rabies shot.  I was able to get us both in for haircuts.

Until this week our schedule is such, that I have been working or we have been driving for follow up appointments in Madison.  We simply have been overwhelmed since he was first diagnosed.

So we concentrated on some farm work and catching up on other things.

We did some tree chopping. Brush piling.

Clearing out the dead ash trees...
These were things that had needed to be done.

We will be 4 months out of treatment come October 15th.
How does it feel?

His salivary glands may never be the same.
His energy level may never be the same.  This was explained by more than one doctor.  
Yet Rich feels as if he should feel 100% again.

He has lost a lot of weight after treatment.  I bought him new 'skinnier' jeans today.  Down two inches.

But we have really good days and then days not so good.

Yesterday was partly good and partly not so great.

Is this our new norm?

We follow the motto given to us by the girls at the infusion clinic and at the radiation clinic.