Wednesday, December 9, 2015

Cancer friendships

I don't know how to explain it, but by the powers that be, we met another couple who has been touched and devastated by cancer.

I met her on a social media site and after much back and forth messaging, we set up a tentative meet. We had decided that we were not axe murderers nor were we some sort of weird internet psychos.  Well we felt we weren't.

We set up a meeting in a public place and had a picnic.
Her husband N, had had stomach cancer the year before and had just finished treatment in January 2015.  It was now October.

Rich and I were getting ready for the 3 month follow up and PET scan. The guys talked about old cars and dogs.

Their lab Jeg was a great ice breaker.  Dogs always are and who can resist such a handsome face as this.

We spent a couple of hours yacking and promised to get together again.
S, N's wife and I keep in touch nearly daily.  We have each other's home phone numbers, work numbers, and cell numbers with the understanding that we can call on each other at any time of day or night.

People and caregivers who have gone through cancer don't have to pussy foot about what to say to each other.
We talk about the treatments, the chemo brain, the horrors of what they go through and... what the care giver goes through.
How we stumble from one step to another our lives tangled up in doctors, labs, radiology, blood tests, and weight loss or gain.

There is no stumbling around for the 'right' thing to say to each other.  A common bond is created.

At the end of our first meet the guys shook hands and gave each other half hugs.

S and I held on to each other like lost lovers, I think we were happy to each find each other in the living flesh.

We've tried to schedule a get together for dinner or something every few weeks.
N has been feeling unwell and today I received the text.

Tonight we'll go see him in the hospital.  We are all entering new territory here.
There are a lot of what ifs...or what now?

Our friendship has grown quite close and quite fast.

Between cancer friends, there is only this.  Enjoy each moment with each other and don't look to hard at the future.
Treat each parting as a goodbye.

Hold on tight.  Cancer is a wild ride.

Saturday, December 5, 2015

Wow Tai Chi!

When Dr. Faris, a psychologist recommended we try Tai Chi, I sort of did an internal mental eye roll.

I was sure it would be a dud of an experience.

I was certainly wrong.

We met with the instructor and she explained the basics of Tia Chi to us. We started with the basics [Horse Stance] and learned how to calmly and easily let tension drain out of us.  

So much of what was taught to us regarding breathing, posture, letting the tension flow out of us and gaining a feeling of physical well being ...was so similar to what we did when we ride equine. After a ride I have always felt calm and peaceful.

For me it was so like being in the saddle and mentally taking charge of everything going on around me yet concentrating on making sure that my mount was also relaxed by feeling ME relaxed.

Except that this Tai Chi was not really related to horseback riding, but is an ancient Chinese Martial Art form.  You certainly wouldn't think looking at anyone who is practicing it.

There is no downside to practicing Tai Chi, it can only really have health benefits.

I can't explain everything we did, but I can say that at the end of the session we did what is called 'Body Scan'.

At the end of the 'Body Scan' the therapist looked across at Rich and asked him how he felt.

Rich blinked and sat relaxed in the chair.  He answered softly with some amazement in his voice.
"I don't think I've ever felt this calm, since coming back from Southeast Asia."
He sighed. "I never thought I could achieve this sort of inner peace until I died."

Peace and calm, inner peace and calm.

This did not come from a pill, not from talk therapy, not from anything outside. It came from Rich himself.

Did I feel it?  Yes I did.  

Just call me amazed.
I take back my inner eye roll and fully embrace more Tai Chi for the two of us.

December 17th is our 6 month follow up and CT scan.

Tuesday, December 1, 2015

Palliative Care Visit Two

From my written journal ... Palliative Care Visit November 24th.
 I think I need a break some days from being a Caretaker.  We met with one of the Fellows — meaning a Doctor who is going to specialize in Palliative Care after he is done with learning and applying his knowledge in a setting like the VA Hospital.
Doc Fellow wanted to know what was on Rich’s mind today.  Well let’s say this,  this Fellow didn’t really know Rich and so asking him that question would lead to a conversation that had nothing to do with Palliative Care.
Rich needs someone to direct and focus him.  So Rich talked about the pain from where his PEG had been.  The Fellow jumped on that and I interjected that perhaps it hurt more in the past two days because someone had been hunting, shot a doe, and had cleaned it in the woods before getting his wife to come assist him.  Dr. Fellow then immediately dismissed the pain as a pulled muscle.  Probably dismissing is not a good idea with Rich.
After Dr. Faris [thank goodness] showed up, … Dr. Faris is Rich’s psychologist and has worked with us for about 6 months…he was able to help direct Rich a bit more.
It came back to the happiness issue.  Rich said he has never been truly happy since he came back from Southeast Asia.  Ever.  There is no joy in his life.  
At this point I become skeptical.  He has never ever had joy?  What about the times he and are are kidding around?  What about the things he plans to do with his grandkids?  What about the joy he feels when he is able to visit with his daughter or the joy that Lily brought him this summer?  This was not happiness?  Laughter, the twinkle in the eye, the hugs given to friends and the laughter…is not joy or happiness?
At this point I become skeptical and see Rich as a Drama Queen.  In front of the doctors he is all gloom and doom.  In social situations?  He laughs, he kids, he smiles and when we are alone he is not the same man sitting in that room.  So I am confused.
Dr. Faris inquired about our incredible relationship together.  Rich huffed a small almost sarcastic laugh.  “I can’t make love to her, she has had medical issues and an infection…and then I don’t think she is into it, not like I want to be into it… So know I just don’t feel anything.”  He made another noise that relayed his frustration? disgust?
All I know is I glanced at the two doctors and saw them both quickly look at the floor.  Dr. Faris’s face turned red.  I know the question he was asking in regards to our relationship was not about sex, but about the caring and deep love we had for each other.  Dr. Fellow, well, by his expression, this conversation was going in a direction he had no idea how to control.
Rich went on to repeat his horror stories from Vietnam.  I sat back, already feeling like a heel and listened to the same thing I’ve heard so many times over and over.  What was coming from him were flags for mental health issues and not Palliative Care issues.  He was unhappy, he felt tired, he felt like he couldn’t do anything, his cancer had ruined his life.
I wanted to stop him.  When he said those things about me, I felt the slow burn and considered leaving the room.  But I wanted to see what progress we could make with Palliative Care.
Dr. Fellow soon jumped up and excused himself.  He was gone for about 20 minutes and actually some of the tension left the room.  Dr. Faris was able to converse and steer the conversation back to what Rich was hoping PC could do for him to make things easier.
I suggested that it seemed to me that at the moment his mental health and this time of the year were overwhelming Rich’s life and that we should try the Physical Therapy and Tia Chi and then return to Palliative Care to see if these things worked for helping Rich’s balance and strength issues.
I also felt that there needed to be a bit more intervention at this point … right now… with Mental Health.
Dr. Faris agreed.
Dr. fellow came back in and we tried to get back on track.  Dr. Fellow explained that Palliative Care was not a fast moving process.  One of the big issues he wanted to bring up today was a discussion of the future.
What would Rich do if the cancer came back?  Had he thought of end of life care? What was his thoughts on dying? Living?
We'd addressed those issues already we told Dr. Fellow.  We had an Estate plan drawn up as well as end of life plans, also known as Living Wills.
I wonder where this direction is going.  Rich's really recovered quite well from all medical stand points, yet he insists that he isn't.
I wonder if I were in his shoes, how would I feel?  
I guess I would certainly feel lucky to be still alive.  And that doesn't seem to satisfy him at all.