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.

Conversations

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.

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.

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.

One
Day
At
A
Time.

CT Scan

The phone rang in the car...well I am surely never going to get used to having a cell phone that is connected via bluetooth to my vehicle...

Anyway we answered it and Rich talked to the doctor who did the prelim of his CT scan.

The doctor said "No evidence of cancer or a tumor." Although the scan did show evidence of a stroke that had probably occurred a few months ago.

If you need a reminder you can see the blog titled 911~what is your emergency?

I'm pretty sure this is the stroke they are talking about. So there was damage to the brain but nothing that showed up right away.
Let us not look a gift horse in the mouth.  

It felt like another elephant had been removed from our shoulders.
So as of yesterday Rich is free of cancer.  He kicked it in the butt with a lot of help from the Carbone Cancer Center and the VA.

Now we look forward and not backward.
Onward.

Nervous as ... well nervous CT Brain Scan

To say that the both of us are not on edge with waiting for the Brain CT Scan/with contrast is a misnomer.
Both of us are anxious.

Rich and I are both a bit short tempered and on edge. Both of us are tired and feel as though we are being dragged along again with something horrid hanging over our heads.

Of course he says he isn't.  But I know better.

Yesterday we went fishing for a little while.  While Rich fished, I walked around taking some photographs and then sat down on the steep bank, content just to watch Rich and talk with him.

The conversation was about anything and everything except the upcoming scan.

Yesterday I finally got all the 'ducks in a row' I think for the scan itself.
Get the required blood test at the VA, visit our VA appointment, then pick up the results to hand carry to the UW for the lab tech that is doing the CT.

Since the CT is being done so late in the day, apparently they will call with the results?

I don't know.  I would like the chance to look the doctor in the eyes while he discusses the scan results.

So another day of unknown will occur today.  

Hurry up and get 'tested'!!! Oh wait.  We'll get you the results...soon.

But I have to think positive as the scan results for throat cancer was clear.

Oh and the fish were not biting.  But I guess fishing is good even when the fish are not co-operative.  It gets you out into the fresh air and your mind is on something else.

New Scan coming up

The CT scan of the brain will be on Thursday this week.

Rich's comments about the latest developments are basically this:
"What next?"

At this point I am trying to get the VA and the UW to be able to 'communicate' with each other better.
I'm not sure that is possible.

So until later this week, keep your fingers crossed.

The Day After the Pet Scan Uh-ohhh

Dr. Witek called Rich the day after the PET scan.

"Our techs were going through your PET scan again and I need to know Rich if you've been having trouble with your eyesight?"

Rich said yes, but we of course hadn't linked any vision changes with anything other than the possibility of normal aging eyes.  The eye doctor had found cataracts too.  We'd told Dr. Morris about that the day earlier and he said that radiation could increase the time frame for cataracts if a person were to get them.

Apparently 'they' found 'something' in the occipital lobe of his brain.  The something was something they wanted to identify very soon.  Dr. Witek had put in an order for a CT scan of the area.  The 'techs' had wanted an MRI but Dr. Witek opted for the CT scan as Rich is very claustrophobic.

There was a knee jerk reaction in our household.  Our good news had turned into a 'Something'.  An unknown.  

We had to go to the VA for Dental, Swallow Clinic, and Mental Health yesterday.  Rich's Dentist did prep work for putting in some teeth to replace those he lost before the radiation therapy started.  Since the Dentist can't place a post in the jaw for partials, he had to make a work around. Radiation in throat and head makes the jaw bone brittle and no teeth can be pulled for about two years without causing huge issues.

Our appointment with Dr. Faris was perhaps the best appointment of the day.  Dr. Faris deserves a nod and some applause as he probably went way past his quitting time to hear Rich out.

He let Rich talk on and on about the Old Days and how he could do anything and everything.  His main complaint is of course how terrible things are for him because he has no energy.  After a long while Rich said out loud, "Maybe I am just getting old and I can't do the things I used to."

There it was, out in the open at least in my mind.  He is not 19 anymore nor 10 foot tall and bullet proof.  He admitted it.
I think it can be very difficult to face the fact that your life is not as it once was.


Dr. Feris discussed Palliative Care for Rich and he actually considered it. Palliative Care is not Hospice but is defined as special medical for people with serious illnesses.  It involves working with a special medical team that focuses on providing the patients with some relief from symptoms and stress from serious illness. The goal is to improve the quality of life for both the patient and the family of the patient.

I asked Rich on the ride home why he was always very negative when people asked how he was.  He didn't really have much of an answer.  I'm of the belief that if you always say you are not well, you will be unwell.

As for the Uh-Ohhh?  It is there and for the moment I am going to cope with it in the only manner I can.  Hope for the best, prepare for the worst, and don't freak out.  No knowledge is more fearful than having knowledge.

I know it is weighing heavily on Rich's mind.  But he told Dr. Feris yesterday that he didn't care, he was not afraid of it after all he has gone through.
We can all put on brave fronts in front of other people can we not?

The PET Scan

This PET Scan seemed so far off in the distant future when it was scheduled on June 15th.
Dr. Witek was pretty confident that he and his team plus the team at the VA had 'nailed' the throat cancer.

We all left the office that day with a good attitude.

Then came the PET day.  We were quiet while driving to Madison.  Of course what was on our minds?
What would the scan show?  Was the cancer gone really? Rich felt he should have tons of energy by now.  How come he didn't?

Both of us mentally asked ourselves questions as we drove to the Carbone Cancer Center.
What next?

Indeed.
The Scan went well and then we ate lunch at the UW Hospital cafeteria.  Rich was engaging and we nervously made little jokes about this and that.

We finally headed to the cancer treatment center and the waiting room.  

Fairly quickly a Dr. Morris and a Medical Assistant, both assigned to Dr. Witek came and got us.  They did the normal things blood pressure, questions, complaints and so forth.

Rich's biggest complaint was that he was still not energetic.  Yet he told Dr. Morris how he used to be able to do certain things like push a wheel barrow with a heavy hay bale in it, up a hill.  But now he had to stop and rest half way up.

Dr. Morris blinked and then said, "Man, you are doing far more than so many people that go through this, I would consider that you are out doing the chores as a huge positive."

Of course that fell on deaf ears.  I sometimes wonder if Rich doesn't think that the medical field will magically make him 19 again.  The period of time in which he could work tirelessly.  I don't think he understands that he is a 66 year old man that has health issues on top of cancer treatment recovery.

I agree with Dr. Morris, Rich's recovery compared to many other patients 'in his shoes' was indeed very good. He was doing things, he was eating foods that many patients never eat again.

Dr. Witek came in with the good news.  The PET Scan showed no cancer at all in the throat area, the scan was clean.
I can't tell you how much relief I felt at that moment. Clean?  That nearly felt impossible.


Rich?  He seemed non-pulsed by it in a way.
  
He complained again about his lack of energy and how things were never going to be normal or better than normal again. He was upset that he would have somewhat of a 'turkey neck' for the rest of his life and that perhaps his salvary glands may never come back to what they once where.


Even Dr. Witek at one point said to Rich, "Dude, you have to understand that you may have to live with these things the rest of your life, isn't that better than the alternative?"

Somehow that did not placate Rich.

But the evil little cells had been killed.  

Of course there is always a chance of the cancer returning in the next two years, and for the next two years we will be subjected to follow ups and more scans.

We went home.  I felt like an elephant had been lifted from my shoulders.

And I found myself going to bed wondering 'what is normal?'
Why complain about being alive?

But then, I am not the patient am I?

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.

Nearly 3 months out of Radiation

Rich had his once a year physical with his principle provider this past week.
She went over his med list and I gave her the CT scan results and ER results from the visit we made to the Boscobel Hospital two weeks ago.

His continued main complaint is exhaustion and being tired all of the time.

When dealing with a person who has had a horrible illness like cancer and especially the very difficult treatment regime that goes along with it, recovery can take a long time.
The chemo and radiation therapy took a heavy toll on him and he feels he should have bounced back quickly.

On the 15th of this month we have the PET scan.  I am nervously wringing my hands.  Questions fly through my mind while trying to go to sleep.

Is it all gone?  Is it going to be okay?
How are we going to deal with this tiredness?

Then we get a phone call from the clinic in Baraboo, they want to set up another CT scan as they read there was a lesion on Rich's right adrenal gland.
Okay.  I've done a bit of reading and this could be nothing, or it could be something.

Or in fact, it could help explain the sheer exhaustion that he has been having.

I read his last blood panel.  I wonder sometimes if a person could be too informed.  It is good to know your results, but then again, do those numbers really show the true health of the individual?  Do we really want to know exactly everything?  Would I want to add worry?

I think not.  Certain parts of his blood panels were high and others low.  However, his primary care doctor handed them to me to put in my file....and really didn't say much about the results.

His red blood cell count is still low but not significantly. She did mention that.

So now we wait until Tuesday. Both of us are on edge, Rich won't say it, but I know it is on his mind.

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.

Hair is growing back!

The last day of radiation was June 15th and Rich's hair kept falling out.  He had no beard and if you know Rich, you know he takes great pride in his luxurious mustache and beard.

Dr. Witek had told Rich not to cut his hair during treatment and that he would lose hair across the back of his head.

He did, but yesterday we saw itty bitty hairs coming back in.
His facial hair is starting to come back in.

This shot probably looks as though he is sad but he was just watching out the window while having morning coffee.

We were watching the mules drink water from the Big Tank.

We still seem to be battling some stomach/intestine issues but at least he isn't pain like he was before.

Yesterday was a 'good' day.  He felt like doing a bit more than he has in a while.  

Follow ups and after care

Things I learned today.

Swallow/Speech Therapy.
Head and Neck Cancer patients must always do swallowing exercises and eat small meals often.  To miss the exercises or not eat a patient will run the risk of losing their ability to swallow.
This is forever.  Not just during the treatment and a while after the treatment.

Radiation damages the muscles of the head and neck.  In order to keep them working, the patient needs to work at it.  For the rest of their lives.

In the back of my mind I knew this because I'd done research at PubMed and also had been in contact with other HNC patients through a website called CancerCompass.

Rich had been doing very well until he hit a road block with his blood pressure and some stomach issues.  We had gone to the VA clinic in Baraboo and the doctor a few weeks ago had felt that the stomach/bowel issues were from a change in medication and diet.  The first line of treatment is to take away the offending medications which could cause the problem.
However, Rich was still having some pretty intense pain in his lower left quadrant [bowels] and intermittent diarrhea.  

We spoke with Dr. Rahim and Rich explained what had been going on.  
Dr. Rahim thought for a moment and then explained that Rich might have had a shock to his intestinal system when Miss Peggy was removed.  
This could have caused paralytic ileus, or a slow down of the squeezing motion [known as paristalsis] of the intestines to move digested food.  
This in turn could have caused a partial blockage of the intestines.
To confirm this, we went to X-ray and indeed a partial blockage was found.

So I/we learned that the digestive system can have a shock and get fouled up. 

Cancer and Depression.
Well these two things can go together.  One of the issues is that when you finish treatment, you figure it is over and you are going to feel much better right?
Not necessarily.

Rich had a few weeks where he did feel much better.  It was amazing, he felt alive and energetic.

Then things went a bit south.  The energy level dropped drastically.
Let me add here that at this time our weather turned very hot and very humid.  Very hot conditions are hard on anyone, let alone a cancer patient.

Recovery from HNC treatment can take a long time.  Life in many ways does not return to pre-cancer normal.

In fact you should have a mindset that life after treatment may just be your 'new' normal.  

So combine feeling terrible, with low energy, pain that you don't understand, and the inability to get things done that you want to do and...
depression sets in.

The journey through treatment is only the beginning as the road to healing is not an easy one either.

As one of the nurses told us today.

"One Day at a Time."

Low Blood Pressure, Lymphedema of the neck

Some of the issues that are still creeping around with Rich are the Lymphedema of the neck, which he was told was 'normal'.
However it is bothering him and I have done some research on this condition.  I find it surprising that the cancer care providers haven't addressed this issue.

Of course dealing with the VA and looking for some Physical Therapy for this condition could be interesting to say the least.
I've been researching nih.gov and pubmed for information on what is called Head and Neck Lymphedema which is shortened to: HNL.

Less than 50% of HNC [Head Neck Cancer] patients get HNL and sometimes it can be pretty serious.  So I am adding this to the list of things we must see the doctors about.

From The Role of Lyphedema in Head and Neck Cancer

Clinically, the presentation of lymphedema parallels its level of severity. In the earliest stage, HNL may present as “heaviness” or “tightness” without visible edema. As HNL progresses, it is apparent as a barely noticeable fullness without functional detriment, and can progress to pitting edema that may or may not affect function. Although rare in HNC patients, lymphedema can present as grossly disfiguring elephantiasis with severe disability in its final stage.

Similar to other side effects that are associated with the treatment for head and neck tumors, quality of life is often significantly impacted by HNL. The effects of HNL are not simply cosmetic. Significant lymphedema of the face, mouth, and neck can result in substantial functional consequences to communication (speaking, reading, writing, and hearing), alimentation, and respiration

Yesterday Rich's blood pressure dropped from 133/68 to 119/67 within two minutes.  So obviously last week's visit to the clinic eliminated his BP meds but it hasn't resolved that particular issue.

Yesterday I did find a site that showed how to do home physical therapy to drain the damaged lymph nodes.  
The hardest part is to actually insist that Rich sit and do the 5 minutes of massage.  I even bookmarked it on his chromebook so that he can watch and follow along when I am not home.

He did it when I insisted on it yesterday morning, but then brushed it off last night.

Of course he is feeling some extreme fatigue right now and that could have a lot to do with both the low blood pressure and the lymph nodes not properly draining.

I think the biggest problem he is having is that he thought when he was done with chemo and radiation...and things would go back to normal.

Recovery from HNC can take a long time.  With some of his other health issues, it may be a bit of a struggle and I don't think he is mentally handling it very well at this point.

Tuesday we see Dr. Rahim, his oncologist and perhaps we can address these issues.  

So we wait until then.

7 Weeks Out and Lymphedma of the throat

Things were really cruising along and Rich was feeling much better day by day. He did things like mowing pastures, mowing the yard, working on the Jeep, doing chores ... his energy nearly seemed boundless.

7 weeks out we hit a sudden snag.  Miss Peggy came out, but the doctors had given him a bit of grief for losing weight.  He told them that it had been so hot and humid that he didn't feel much like eating.

Then yesterday, after I got home from a 'graveyard' shift, he told me he was not just feeling quite up to par.  I helped with chores and then fell to sleep.

He has lymphedma~~
"Head and neck lymphedema occurs when the body is unable to transport fluid due to damage to the lymphatic system. It happens when scarring from a surgery blocks lymphatic vessels in the neck or the lymphatic system is damaged by radiation therapy."

It started creeping in slowly and has come to what I'd consider full force right now.  So far it hasn't impeded his speech or swallowing, but I do notice that he is trying to clear his throat more often.
I'm sure that his lymph nodes around his neck were damaged with radiation, another little thing that we didn't know might happen.

I'm going to look into the massage technique of moving the fluid out of below his chin.

On a second note, work has tossed me into the fray of things.  Since my first day back after 3 weeks off, I have worked 40 hrs a week and the shifts are all over the place.  I took the time happily because Rich was doing so well.

Now that I believe that Rich is feeling crappy and not eating well, it is time to put my foot down at work and tell them that I need to be taking more time to take care of my husband.

Cancer taught me that being with my husband and having quality time together is more important than most anything else.

Of course Rich is looking forward to having our 10 year old Grand daughter come for a week's visit from Wausau.  He bought a fishing license, so he can take her fishing.  He is going to teach her how to ride Fred our fantastic old mule.
He plans on taking her for rides on the 4 wheeler.  And just spending some one on one time with her.
Lily was very distraught over Rich's cancer diagnosis and this should help both her and Rich feel better.