Sorting it out

Over all Rich's health physically since the knee surgery to remove the nasty patella bursa, he has regained mobility and some strength in that knee. We have been seeing PT twice to three times a week and it is obvious to me that he needs to be going back to Pulmonary Therapy.

I try to bribe him into moving about and doing things. But he is focused more on either sitting at the kitchen table and staring out the window [when I inquire as to what he is looking at he seems to come back into the present world and blink...his answer? "Nothing."]

Part of this is the damage done to his brain from the stroke in 2017.

One of the very hard things to separate out with all of Rich's past history of PTSD and MDD is the lack of motivation which was there pre stroke but is now much worse.
In fact the medical field studies Apathy and Hypersomnia. Both of these neurological issues can happen after a stroke in the front part of the brain. Let's toss in some other medical issues and the patient becomes very 'complicated' as the doctor who did the knee surgery said to us.

Is it depression? Is it PTSD? Is it neurological? Bradycardia? COPD? Is it the Pulmonary Emboli? Painful bursa? Is it imagined? Is it real? What is it?

Hypersomnia is just a fancy word for being tired all of the time. Rich had this during his last bought of severe depression. He keeps telling Dr. Schiffman that he wants to feel energetic and motivated yet he just feels tired and can't seem to get out and do anything.

Since I live with Rich daily, I see little bits and pieces that the doctors don't see.

Going to Culvers last week, I handed him an empty soda cup so he could get his Pepsi. I paid and then walked over to where he was at. He stood in front of the soda machine and held the cup.
"I should know this," he said. There were people waiting so I said, "Let me."
I took the cup and filled it and handed it to him.  He shook his head.

When we sat down to eat he mentioned the soda incident and told me that it really bothered him.

There are small things that happen and finally we got into a discussion one morning.
He said he was 'Dizzy'. He'd said that often to Dr. Schiffman and to his therapists who took B/P, 02 readings and came up with normal. It flummoxed most of the doctors.

So I asked Rich.
"Tell me about Dizzy. Is the room spinning?"
No.
"Do you feel like you are going to barf?"
No.
"Does it feel like you did when you had Brain Fog from chemotherapy?"
He glanced at me.
Yes! It feels like I am not connecting! I don't like it.
"Your brain suffered a pretty bad injury in 2017. So it has troubles on some days making sense of everything."
I don't like it.

I feel like I am watching a slow motion crash happening one very infinitesimal step at a time. However. At least I am here for that journey right now. I can be a part of it with him.


There will be days of heartache and frustration,
anger and resentment...

laughter and love
joy and sorrow.

One day at a time.

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.

3 Months Out/PET Scan today

Shall I say that I am up early and worrying and have been worrying for about a week now?

The dreaded and much looked forward to PET scan is today at noon.
Results will be at 3:30 PM with Dr. Witek delivering the good news.
I'm sure they knocked out the throat cancer.  We are trying to only think positive but are prepared for the other diagnoses.

Rich has said if IT isn't gone,[cancer has become an IT now in the house], he would consider a simple option but could never subject himself to the hell that he/we went through again.  We'd seek palliative care.

Radiation in high exposures do cause some radiation sickness like symptoms.  The radiation can attack your red blood cells, affect your intestinal system, and the blood cells that produce bone marrow.

Rich is still recovering from his treatments.  The Carbone Cancer center used Tomotherapy which:

"An important distinction between tomotherapy and other radiation treatments is that past methods exposed much larger areas of the body to higher levels of radiation distributed from fewer angles. Tomotherapy, with its ability to deliver lower doses from many different angles, affects very limited areas of healthy tissue and results in fewer side effects." 
From the Tomotherapy Radiation Univ of WI Madison



 So the next few hours and days will be interesting and hopefully very joyful ones.

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.