Skin Cancer around the Eye and CT scan ordered.

I found a message on my cell phone.  It was Dr. Rahim from Oncology.  He left me a detailed message that he had ordered a CT scan of Rich's abdomen "as a precaution" and because he is detailed.

In August we'd gone to the ER because of stomach pain that was intense.  The doctors at Boscobel thought it was a blockage and did a CT scan.  The doctor who had dx'd Rich's throat cancer the August previously was there and gave us the print out of the CT. He wanted me to give it to Rich's provider and his oncologist.

I asked him what it all meant.  The lesion on the adrenal gland? The remark by the doctor who read the CT?  What was the "nonspecific sclerotic density in the right iliac bone, that should be further evaluated by a nuclear medicine bone scan?" At the time I worried when he said that could indicate the beginnings of bone cancer.

See you live in fear of someone finding something...anything once a diagnosis of cancer has been reached.  

Rich's diagnosis of having nodules of skin cancer around his eyes in several spots was alarming to me.  But he did his male stoic thing and shrugged it off.  He did say however, that the locations caused the eye doctor to be concerned enough to schedule biopsy and surgery to take them off and while they were at it, they would nip his upper eye lids which sag and block almost 30% of his vision.

He has been feeling run down the past few days and I did try to explain to him that subzero weather was hard on those who have COPD and who have had radiation treatment.  

"Where did you read that?"

"Well honey, it was actually in the audio that I took with our first meeting with the oncologists."

Sad note.  We lost Mona yesterday, our eldest hunting hound.  Good note.  I still am waking up next to Rich each day and for that I am grateful.

Another 13th Visit

Just when you thought it was safe to go back into the waters...

Rich went to his Dental appointment as was scheduled.  During our short two visits to Palliative Care, Rich had complained about 'floaters' in his eyes.

Dr. Loconte didn't give it a thought, they seemed more concerned about his overall well being.  Let's just say that Palliative Care is a good thing, but it didn't work out for Rich very well.

After his Dental appoinment, Rich walked over to see the Eye Clinic. He thought he'd see if he could get an appointment to see an eye doctor about the floaters.  They seemed to really bother him quite a bit.

As luck would have it, an appointment opened up and 'could he please wait for the doctor?'  Rich agreed, it was rare that you ever got in on a same day at any clinic at the VA.

The UW eye doctor showed up and listened to Rich's complaints.  Rich's eyes were dilated and examined.  He told Rich about the floaters.  If they got worse or he saw flashes of light, he was to 'get in' immediately. 

Then he asked Rich if he'd had any family history of skin cancer.

I think that took Rich by total surprise.
"Nope."

The doctor said that he was scheduling Rich for a biopsy in a few weeks as he had skin cancer under his eyes. These areas would be removed as cancer near the eyes was not a good thing and they didn't want it to spread to his sinuses nor his eyes.  He told Rich what kind of cancer it was called and that ... he the doctor was 99% certain that these spots were cancer.
And by the way his drooping eyelids would require surgery as they were blocking at least 30% of his vision.

When Rich got home, he walked in the door and said "I saw an eye doctor today, they are going to do surgery on the lids so I can see better and did you know I have cancer under my eyes?"  He paused and thought a moment.
"I think he called it 'Eye Cancer Lymphodemia'."

I shook my head and said, "I doubt that is what it was called!"

Then I did some research and found the spots that Rich was talking about.  Indeed when I compared them to Basil Cell Carcinoma 'on the face and below the eye' I was surprised.
Indeed I could see it plainly.

And we wouldn't have had a clue except for a cancellation on the 13th.

Now we have another wait and see.  Another cancer diagnosis that happened on the 13th of all dates.

However this cancer...if it is Basil Cell Carcinoma and it has not spread deeply into the tissues, has a 99% survival rate of 5 years or better.

And so it goes.

6 Month follow up and CT scan

December 17th.

The long drive to Madison seemed to take forever.  We listened to the radio and commented on how wet our winter was so far. We talked about just about anything and everything but what we were going for.

A follow up CT scan 6 months after the last radiation treatment.

It seemed long ago, yet such a short time ago. Was this going to be fine?  I don't know what Rich thought because he didn't seem to be worried about it.

Both of us were in a fairly positive mood.  The long day at the University of WI Hospital didn't really excite us much.  We found the lab and got the blood work. We found the cafeteria and both of us had great lunches.
UW Hospital of Madison is one of the most frustrating places to get around in. Nearly every first time to ... well, even us after 35 some visits, sometimes have to ask for help to get from one place to another.

Finally we were in the waiting room for Radiology Oncology.  I recall our first wait there.  Scared to death of the unknown that was to come.  Frightened and nervous.  I wasn't frightened now, to say I as not nervous would be an overstatement.

I was just hoping for good news as was Rich.  We'd found that doing Tai Chi together had really helped his overall feeling and general attitude.  He was better than when Dr. Witek saw him in September when Rich still felt exhausted from the treatments.

His name was called and we went into Witek's exam room where his Medical Assistant took his vitals.  Rich's weight was pretty good. It was 179.  He'd started cancer treatment at somewhere in the 190's.  But the weight loss had actually come after the treatment stopped.

Rich hadn't seen it himself, but he'd been more active around the farm and of course not having all of his teeth and the saliva issue had curbed his appetite some.  Over the past few months, his weight had settled right around the 178 or 9 lbs.  

The hair he'd lost was coming in. In back where the tomography targeted radiation had caused a complete loss, the hair was coming in black and curly.  A startling difference to his mostly silver straight hair. His goatee was black on one side too.  I thought it was pretty cool how one side of the mustache and goatee had come back in such a dark contrast.

Dr. Witek walked in and turned on his heel to face Rich.  
"Good news man! It is all good, nice and clear CT scan!"
Rich grinned, I felt all the air go out of me and felt joy.

Dr. Witek asked about Rich's vision and mentioned that the CT scan in September after the PET scan had shown a significant stroke in the occiptal lobe of the brain. 

Rich waved his hand and said things were better. He was doing Physical Therapy for that and Tai Chi for overall balance and besides, it made him feel relaxed and good.

We inquired about his wedding and Dr. Witek grinned and began to show us photos and talk about his wedding.  It was a very happy moment between Dr. and Patient.

He examined Rich and then made a time for follow up. He stated that Rich had had enough radiation for a while and the next visit should be in April and no CT scan.

It was the most beautiful Christmas Gift we could have gotten.

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.