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.

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.

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.

Incorrect Billing

I'm picking this up from Sunday's post More Madness in Billing Non VA Medical Care posted on the 22nd.

I called the Billing Department at Boscobel and talked to the person I'd spoken with on November 2nd when I'd caught the billing error.  Medicare had been charged when it was actually supposed to be billed to Non VA Medical Services.

She apologized for the letter I'd received and while she was on the phone with me removed me from Credit Management Control's naughty list.

CMC is the company that handles collections for all sorts of billing for many different companies.  They are extremely aggressive and say they are not in the collection service but are in the Recovery Service.  Most people read the letter and see collection written in their title.  Even though it is literally not there.

Today after a very lengthy day at the VA, we came home to find an automated phone call from this very same company.

Sigh. Obviously they haven't noticed that we were removed from their list of Recovery due to billing errors by the Front Desk at the Emergency Department.

For anyone who has a question as to the work flow for a Veteran seeking non VA medical care, I copied a chart I found.  I am downloading it to my Kindle so I can take it with me to our next ER visit [let's hope this doesn't happen for a very long time].
Perhaps a visual will help the Front Desk get things straight.

One of the big concerns is that an ER that treats a Veteran with service connected disabilities, is the fact that they must notify the nearest VA Hospital within 72 hours or risk not getting paid.
Listen up you Billers and Front Desk people, get it right the first time!

I hope if any other Veteran sees this they will make sure to make a copy of this to take with them.  I need to print this and put it in my file that I take with me any time we visit the VA or a non VA doctor.

I carry a file that has important phone numbers, billing addresses, cards from Non-VA Medical, and the latest current list of medications.

Be prepared.
Sigh.
Be prepared.

More Madness in Billing Non VA Medical Care

In August we went to an ER directed by the Triage Nurse at the VA in Madison.
Refer to the previous post in which I quote from the VA~non VA Medical rulings:

Do I need to get approval before going to the emergency room?

No. If you are an eligible veteran, and a VA facility is not feasibly available when you believe your health or life is in immediate danger, report directly to the closest emergency room. If hospitalization is required, you, your representative or the treating facility should contact the nearest VA within 24 hours to arrange a transfer to VA care by calling the VA Transfer Center at (813) 972-7614.

In October, we recieved a EOB, explanation of benefits that Medicare had been billed.  I called them and corrected that so the Boscobel Hospital said they would then bill it properly.

I wrote down the person's name, date I spoke with her and the time of course.  Something left over from my days in Commercial Insurance and Underwriting.
She promised to re-bill it properly to the Non-VA Care, I confirmed the address she was to bill it too and I filed it as 'unresolved'.

Yesterday's mail contained a very nasty letter from the collections department of Gunderson Lutheran ~ to which the Boscobel Hospital is now affiliated with.
Let me say this. Gunderson Lutheran of LaCrosse has a ruthless billing system.
They often call the patient on the day they leave the hospital and ask if they'd pay the bill with their Master Charge or Visa.

Yes, they did that to me in 2002.  I asked the caller if they'd billed the ChampVA yet.  'Well no...'

Gundersen Lutheran is well within their 'legal' means in sending out threatening and harassing letters, but I've never met a more difficult billing department than theirs.

So tomorrow after working a Graveyard Shift, I'll come home and spend time talking to the Boscobel Business Office because there was no phone number attached to the latest threatening letter.

Once again I will explain that the billing was done incorrectly and once again I will probably call the Non VA Medical Department and speak to yet another overworked person that handles the non VA claims for disabled veterans.

Sometimes it isn't just enough to go through a serious medical issue with your spouse, but I feel sorry for those people who do go through it and then have to deal with this kind of bullying on top of an illness.

If a person doesn't have experience and know their way around hospital/clinic medical billing, it can be quite the disaster.

More on how this shakes down later.

Red Tape Increases with Veterans Admin Districts.

Or well, at least that is what I was told by the Non VA Medical Claims and Authorization Department.

"Ma'am, your husband was taken by Ambulance to a hospital that we don't have in our system for care. Because of the re-districting on January 1st, 2015 he should have gone to ....mumble mumble ... which was a 90 minute drive.

So I read to him the following:

Do I need to get approval before going to the emergency room?

No. If you are an eligible veteran, and a VA facility is not feasibly available when you believe your health or life is in immediate danger, report directly to the closest emergency room. If hospitalization is required, you, your representative or the treating facility should contact the nearest VA within 24 hours to arrange a transfer to VA care by calling the VA Transfer Center at (813) 972-7614.

And he remained stoic and explained that the Non VA Medical Claims personnel were short staffed and he himself was only seeing claims from the beginning of May.
He repeated to me that someone would have to determine whether or not his transport by ambulance was medically necessary.

I asked him to call the VA Madison number and listen to the first thing said, "Welcome to the VA, if this is a medical emergency please hang up and dial 911."

He asked if I got prior approval.  
I thought evil nasty things before I replied.

"I should tell a man who is laying naked on the floor having a stroke while I grab a phone and call for an approval?  Who are you kidding?"

I know I heard him shrug, or my mind did.
He replied the Vernon Memorial in Viroqua is not part of their district.  BUT, wait...we are in the very same state.
Nope, the state was redistricted.
I looked up the state and the district.  We are #12, the whole state, so who was he kidding?


The billing would be sent to Tomah -- even though it was addressed to Non VA Medical Claims and Authorization Department, Madison, WI.
That means that the claim was sent to Madison, who sent it to Tomah, which is not the hospital he was getting care at.
Tomah makes a determination as to whether or not it was a true emergency.

And he had no providers in Tomah.

As to the threatening letter he told me to call the Ambulance company back and tell them to be patient and that they needed to hear from the VA. They couldn't put us in collections until they heard from the VA...in fact the VA was the Federal Government and NOT and insurance company.  It was like the IRS.

He was a bit smug, but I wrote that down and told it to the Ambulance company.

So the horrid red tape continues. 
Nearest hospital ... must mean nearest secret hospital that only the VA and the secret hospital knows of.

So I forge on, building a larger file and keeping names and dates.
Thank goodness I've done this sort of thing before.

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.