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.

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.

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.

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.  

16 days after

Today we are 16 days out of treatment.

Rich is doing better, he still tries to do 'too much' and push the limit, but that is in his nature right now.
He feels that he has fallen behind and lost time to the treatment.

He saw Dr. D, the dentist today and had his teeth and mouth cleaned.  Dr. D said things looked very good in 'there'.
And Dr. D will be making some temporary teeth to fill in the ones that were taken before radiation/chemo treatments. The permanent ones will take longer to make than 30 days.

Rich is pretty excited to 'get' some teeth back!
Watch out world, he will be chasing after steak again!

His throat is still very painful but compared to some cases, I guess he is doing quite well and healing quite fast.
It seems like a miracle ... we don't have an appointment now for nearly a week and a half!

I feel like I could drive to the VA hospital with my eyes closed.  
Total mileage for driving back and forth for treatments and for other appointments since April 28th?

6, 250 miles.
Whew.

I return to work at midnight tonight.
So things are returning to normal, something I wasn't sure would happen at the end of April.

So far, so good.

Update ~ Mental Health

Well the powers that be finally did transfer him to the Mental Health floor.

It is a lock down floor.  It didn't used to be this way, but changes over the past few years have made it so.

My husband's room has no shades, blind, curtains.  No door to the bathroom.
His bed is bolted down.  There is a chair, it is steel and bolted to the floor.
There is no patient phone.
All calls are screened through the nurse's station.


His room is locked.  He can open it up and ask to see a nurse.  Nurses access him by key.

He is not bothered by this as he feels that his cell is a safe place for him to be.

His team of doctors that saw him this morning told him that he needed to socialize.  He said no.  The last thing he wanted to discuss was war stories with other vets.  He just wanted to be left alone.

I know, you are probably thinking that this is anti social behavior, and yes it is.  But he feels safe right now.  
He has made his radiology treatments and says he must be prepared to do chemo tomorrow as he wants to do it whether he is in the 'right place in his head or not'.

He told me that this cancer is not going to beat him.  At least this is a good attitude today.  We have talked often on the phone.

He cannot use his CPAP at night unless his door is open and there is a nurse sitting in the doorway.

He feels bad about that and has decided not to use his CPAP.

His chemo is at 8am tomorrow morning and I will be there to support him.

We are wondering if he'll be discharged on Friday.  We will know Friday.

His daughter and son in law are bringing a futon to put in the living room so he won't have to negotiate stairs for the next few weeks.  They are also coming armed with weed whackers and other tools to help get the yard whipped into shape.

Today I bought a used self propelled mower and started hacking away at the yard.  Last night our wonderful neighbor walked down and started on hacking the grass around the house.

Looking at a nicely mowed portion of yard relaxed me in a way I haven't felt in weeks.  Odd isn't it?

The fellow that we deal with regarding lawn mowers will come out Saturday and give me a lesson on the Country Clipper, which is Rich's pride and joy mowing monster machine.

Back to Rich.  I'll be there for chemo and radiation and then I think I can stay and visit him on the floor or under nurse supervision in a common area.

He is looking forward to the visit.  But is having a hard time with feeling love for me.  He shuts down his feelings while under stress.

The thing is, he still understands what he is doing and knows that he needs help.  We call it Building Emotional Walls.  I'm okay with that as I've been through this before.

~~~~ Update...
Rich will be coming home for the weekend!

One battle after another

What in the world to do?  

We made our radiology appointment yesterday.  Rich was wobbly on his feet and still very stressed out over the reaction he'd had last week to the second line of chemo that he'd received.

We were late for our chemo appointment as both RAD and Chemo were scheduled for the same time.

Nurse Jackie noticed right away that Rich was in a wheelchair [he didn't feel he could walk safely to the Infusion Clinic].

Rich is a veteran with PTSD issues from the Vietnam War. The stress of chemo along with the health issues of going through chemo and radiation therapies at the same time were taking a huge toll on his emotional status.  Enough so that when we got to the Infusion Clinic that Nurse Jackie realized that we had a pretty huge problem.

If a person is extremely stressed and emotionally distraught, chemotherapy will only worsen any healing that can go on.

Nurse Jackie recognized what was happening with Rich and immediately began to assess him.  After some phone calls and a conference with his Chemo Oncology doctor, Dr. R, it was decided the best and safest thing to do was to get him admitted to the Mental Health floor where he could get some help yet still be close enough to be treated with Radiation.
Along with that he could get help with his emotionally distress so he could be prepared for on going chemo, which he does want to continue with.

It seemed like an easy enough and simple enough plan.
6 hours later we were still awaiting a decision.
The mental health people didn't want him because he had a PEG tube and used a CPAP at night.
He was taken to the 4th floor and they didn't really want him as he had been labeled as having mental health issues.

We finally got him settled on the 4th floor and Steph and I went home.

As of noon today his attending nurse on the 4th floor felt he should be kept on that floor because of his past issues with chemotherapy.  But the powers that be decided he should be on '2B', Mental Health.

No one but his nurse has had interaction with him.  The admitting physician came in and gave him a quick once over and since he was not ill enough, thought he could be transferred.

No one from Mental Health has seen him either.  A man in pain from ongoing radiation and extreme anxiety from chemo, left in a room with his thoughts of confusion and more anxiety.

It leaves one to ponder what the Veteran's Administration has in place for veteran's who have both medical issues and mental health issues.  At this point it seems that they have no good protocols in place.

The VA works well, when it works.  It needs constant shoving, pushing, calling, and nagging when it comes to letting someone fall through the cracks.

At the moment, I am at home trying to push, shove, nag, and get answers.  My wish would be to sit with my husband right now and offer him my support.

The male nurse we met a couple of weeks ago in the Emergency Dept stopped me yesterday and asked 'Who is supporting you?'  I nodded towards Rich's daughter, Steph.
Truly though?

I feel as though I am in free fall without a safety net myself.

I am only left with questions that are unanswered and doubts that linger.

Last week I nearly lost my husband to an Anaphylactic reaction, this week I lose my husband to the inner bowels of the VA hospital who seems to 'not know' what to do with him.

I know I can't bring him home right now, and at the moment I am too exhausted to drive 2 hours one way to be with him.


The severity of his Anaphylatic reaction last week on a scale of 1 to 4 was a 4, this told to us by his chemo doc yesterday.
I can probably say with some confidence that my stress level at this moment is off the charts.

I feel helpless and frustrated...and exceptionally drained.

Yet, tomorrow is another day right?

Coping with Emotional ups and downs

One of the unexpected issues I'm dealing with this weekend is the after affects of the nearly deadly reaction to Cetuximab.

Rich is beginning to have some emotional issues with his daily outlook on life.

Some of these are normal for patients who have cancer and are undergoing treatment.
In my mind combining chemotherapy with radiation at the same time is a pretty tough regime for the body to handle.
Some things that he is experiencing:

• Worry
• No interest in things that were normally of interest
• Emotional numbness
• Disconnect 
• Feelings of no self worth
• Anxiety
• Depression
• Hopelessness
• Extreme Fatigue

I think that the emotional side of being treated for cancer is taking its toll on him.
He feels helpless, as if he can't do anything that he normally does.
He is extremely tired and fatigued all of the time and has developed severe trembling which seems to confuse the doctors.

I have an explanation for that which is pretty simple.  Combine his medications, add anxiety, distress, emotional fatigue, and physical fatigue, and you will get shakiness.

Chemotherapy adds to this by giving these very same symptoms aside from the toxic side effects.  Chemo of any kind can give a patient these feelings.
The 'cancer' diagnosis itself is a reason to send anyone into an emotional tailspin.

Since the Cetuximab treatment the emotional fall out is much worse than it was the previous week.  This makes complete sense to me.  But not to 'my patient'.

My once very strong independent husband, who was THE decision maker around our farm and house has suddenly had it yanked away from him.

This week has been an emotional roller-coaster that would give anyone a pause that is a caregiver.
Last night I held my husband for over an hour while he wept.  This was the most I could do for him.

I felt helpless.

Where Flowers Bloom, 

So does Hope.

So today is one more day.

And I continue to live by the advice found on multiple cancer sites.
One
day
at
a
time.

What about his perspective?

What is it like to suddenly have your life turned upside down and everything turned crazy at once?

What is it like to suddenly have your quiet life in upheaval.  Doctors and family members are rushing you from one treatment to another.  One appointment after another.

Your quiet life on the little farm is now gone.  It is suddenly replaced by a steady stream of labs and appointments all week long.

You feel sick, you feel as if you have no energy.  It is a struggle each day to eat and to take your medicines.  You don't dare drive or go anywhere because you feel woozy and weak.  Your throat burns and you feel wobbly and exhausted.

Your life has been taken from you.  Yet the doctors and nurses say how well you are doing, the tumors have shrunk so much.  
They don't live in this horrid little world.  No one does but you.  You ache, you are tired, you have no life anymore.

You are offered little platitudes from everyone.  Nurses say "One Day at a Time".  You have an idea where you'd like to stick that.

Your life has spiraled out of control.  You no longer have that control of where, how, and when you want to do things.

Your family means well, but they push to get you to appointments on time, to make sure you eat, to make sure you have fluids, take your medicines...
and you just want to sleep and make them go away.

They don't know what it feels like, how could they?  It is not their body.

And you are angry and sad.

They even have the audacity to say it may get a bit worse before it gets better. And you ask yourself, I thought this was worse, I thought this was hell, ...how can it possibly get worse?

And your wife hovers.  She keeps trying to make sure you are doing what you are supposed to do.  You've snapped at her and then feel bad.
You are conflicted and tired, so tired.

You'd give anything just to feel a bit better.
And you know you have to continue because it is working.  But you don't have to like it.

Small Victories

Yesterday's visit with Radiology was quite surprising.

Rich's weight had only gone down 2 pounds since last Monday.  The Radiology Nurse felt that it was a job well done considering the week before he'd lost 8 pounds in 4 days.

I was shocked myself but very pleased also.  It meant we were doing something right.  
I'd been making shakes out of fruits, yogurt, ice cream, ensure protein & calories booster powder, and milk.  I'd made different blends and he'd been drinking a glassful of it whenever he felt like it.

I'd made home made macaroni and cheese and he'd eaten that in small meals whenever he wished.  Frequent small meals.

Anything that he felt like, he grazed on.  Sometimes it was good food like an apple, and sometimes it was not so great like a Hostess Cupcake.  

His energy level still concerns me.  He is so exhausted that he stays in bed almost all of the time.  I was reading the side effects of Cisplatin and extreme fatigue was one of them.  I'm not sure that staying in bed as many hours as he is, is healthy.  It causes him to be more depressed or is it depression itself?

Hard to know.

But yesterday's visit was a positive one.  Nurse coordinator Jackie from the UW told Rich as long as he could keep his weight up he didn't have to worry about the Jevity.  Of course I got the smug glance from him!  That is okay with me though.  I thought I was doing the right thing, but since we'd kept him from losing more than 2 pounds, I figured it was a victory all the way around.

Rich's daughter had emailed me very early in the morning that she and the kids would be coming to visit in the afternoon.
She thought she'd take Rich for Chemo and Radiation today and let the kids stay with me.

I welcomed the company and the offer.

This is exactly what was needed for a Care Giver break.  I get to do things with the grand children all day and rest a bit.

Steph and I worked most of the afternoon on trying to figure out what meals we could cook up for her Dad so that he could graze all day.

For supper I made a huge pot of spaghetti and some garlic bread.  I cannot say enough how much of a pleasure it was to sit and eat with other folks.

Then Rich ate two small helpings and I felt like jumping up and down. Another mini victory.

Today is Radiation and Chemo day.  Steph is an angel for coming to the farm and staying.  She really saved my sanity.

Small Victories.
One day at a time.

Re-thinking the situation

During a discussion last night with his daughter on the phone, I said "He is acting just like he did when his anti depressants stopped working in 2012."

Bingo, the light went on.  Today is day 6 of Radiation and day 2 of Chemotherapy.

Both combinations are sapping his strength which he never imagined possible.  
Major Depression along with PTSD is going to make this 6 week long treatment much more difficult.

His condition will generally deteriorate unless I get the proper help by the VA.

A major blow to his mental health was when his old trusted doctor moved to New Zealand and his new doctor after one meeting decided to move onto another job.

He feels abandoned by his mental health doctors.  I was so concentrated on the Radiation and Chemo treatments that I was missing part of the puzzle.

Communication with Rich has dwindled with me. I only seem to be trying to get him to eat or take his medicines at the right times.

With me struggling with the farm and work issues, I failed to see the sudden total withdrawal from life.  His attitude is getting more and more withdrawn ... now that I've opened my eyes and mind, I can see that.

Let us hope that today's long visit bring some much needed help, hope, and understanding.

The Difficult Patient.

Today Rich had a very hard time with his 'gag' reflex.  He wasn't able to put in his mouth pieces for the Radiation ... Tomo Therapy treatment.

They ushered him to the waiting room while a tech went to trim the mouth piece so he wouldn't gag.

He got through his session but literally splayed on the waiting room couch.

Soon enough, we went to another waiting room where our male nurse ushered us into a room.

He lectured Rich on using his anti-nausea meds to keep the nausea at bay. This was day two of someone telling him to take his meds.

He nodded as if he would follow directions.  The nurse also told him how important meals were.

Yep, he knew that.  But someone needed to make him feel better.  

The male nurse from the RAD department explained that more than likely he was feeling side effects from his chemo treatment.  The side effects from this week's radiation therapy would effect him next week.

I indicated that he had not been eating and of course Rich argued that HE had eaten.  And that he had 2 shakes last night and a bowl of cereal this morning.

I sighed.

Rich had slept most of the way in to MAD city and all of the way home. When we got in the door he mumbled that he was going directly to bed.

I insisted on his nausea medication and then his normal noon time meds.
He shrugged and headed upstairs.

I brought them to him and he took the meds.  I checked the fluid level in his CPAP, tucked him in, and proceeded to do the things on my "To Do List".  
This included getting him a wedge pillow, some Boitene rinse for his mouth and making phone calls.

Okay, this may sound a bit selfish, but I went to visit my dog at the Chiropractor's Office.  Damn, if Morris wasn't into his job. He was busy greeting patients and walking them to the door when they left.

He greeted me and then went back to 'work'.  He is in his glory and so is my good friend and wonderful Chiropractor Dr. Bjerke.

I was almost annoyed that my dog was Mr. Sociable and treated me as if I were one of the patients.
I'm smiling as I type this.  We should all be blessed with a wonderful dog like Morris.  I'm glad he is busy working and not stuck in his crate all day.

I worked at chores in the light rain and even began to set up things for moving animals this weekend or perhaps next weekend.

Tomorrow is Chemo Day.  Since my husband will be attached to an IV for 4.5 hrs I can talk to the nurses to see if they have any helpful hints as to 'how' to convince Rich that he needs to eat no matter how tired he is.

Eating and nutrition is the key to getting through Chemo and Radiation Therapy.

And this cancer has over a 90% cure rate.

Prepared for this ride?

Our weekend was busy.  We had company for which I am grateful as Rich loved holding Gunner who is a newborn.

Here is the Cliff Note Version of our last few days since Friday which went well.
~~~~
Company.
Rich wore himself out being the 'host with the most'.  He took our guests to lunch and stayed up most of the day when he should have been resting.

That evening he said he'd do chores while the mom of the children took her wee ones and went to Walmart in town for diapers.  I took her husband out for a lesson on long exposures.
I enjoyed that immensely after working all day.

We came home and NO Rich.  He was in the bathroom. He said he'd felt dizzy doing chores, weak, and thought he wasn't going to make it back to the house.

I helped him to bed and get undressed.  Later I brought him water when he said his mouth was so dry.  I tried to give him some Biotene to rinse with as it was prescribed for this very reason.

Let us just say that his extra activity and his treatments knocked him totally on his arse.  
He kept telling me that he felt strange and he couldn't describe it.
Then he would say he felt like if he ate he might throw it up.  I told him that was nausea and to take his nausea medicine.  He flatly refused.

Sunday wasn't much better but our visiting friends said he ate cereal and an egg scrambled but nothing else.  He was drinking water though.
~~~~

Monday.
We spoke with the Social Worker for Radiation Therapy. Jackie told Rich that he'd lost 6lbs over the weekend and she was concerned.
We discussed the weekend and she said that food having an off taste was fairly normal for this.
She recommended that he start taking his anti nausea meds and begin PEG feeding with one can per day.

Let's cut to the chase.
He ate a good lunch.  Then spent the rest of the day in bed.
I got him up to eat.
He came downstairs and told me he wasn't eating.

I made a chocolate malt with 'Ensure' mixed in.  He drank two glasses.  Then announced his intent to go to bed.

I brought out the Jevity and said that he needed to have one of those before bed. 

The look of anger on his face was a new thing for me.  He swore and then told me to 'get on with it'.  I helped him pour the liquid into the tube and then held it.

He kept getting more angry, the 'liquid food' wasn't going down fast enough for him.  Patience was not something he had very much of.  He pushed it down and then told me to put the rest of the Jevity in the fridge.

I dumped it and tossed the syringe.  Okay, let me rephrase that.
I didn't just dump it...I dumped it and then threw it as hard as I could into the recycling bag.

If he'd had the strength, he would have stomped up the stairs to bed.  I helped him undress and turn on the CPAP and Oxygenator.

I asked him if he was going to take his night meds.  He waved a hand at me.

Really?  Is this how it is going to go?  He will be sweet and nice when talking to the nurses and mean and cranky when we are alone and refuse to really do what he is supposed to?

Day 4 of Radiation.  Day 6 since first treatment.
And I wonder truly if I am prepared for this ride.

First Day of Chemo and Rad

What a wonderful daughter Rich has.  Stephanie came Monday night to our house and then stayed over night and helped me with chores in the morning.

She then took her dad to the MAD VA and went with him through all of his appointments.

Chemo took hours to do and she took notes for me, asked questions and even updated our Gmail Calendar with new appointments.  What a fantastic way to share information!

After his long day, she took him home to her house.  They met me at the UW Carbone Cancer Center today where I picked him up and brought him home.

Our schedule for Rad will be slightly different each week, so no set time...it will change each week. 
Next week the times vary at least 3 times.

Rich had a medication in his Chemotherapy that is for nausea.  One of the side effects is that it could make the patient euphoric or a bit moody.
Oh wow, talk about having someone who is ... like on speed!  He talked volumes louder and was almost obnoxious about telling me how to drive.  He rambled on about things ... he was talking faster than I was driving.

Yep, our first chemo experience was enlightening.  Next week I'll talk to the nurses in the infusion clinic and ask them if this is abnormal.

He had his second radiation today and had forgotten to take his anxiety meds. He said it was the longest 15 minutes of his life.
We stopped to eat lunch at Grandma's Cafe in Arena, WI.  By the way, if you ever travel Highway 14 from Madison...stop there.  It is good food and served right!

We'll be up at 5:30 A.M. tomorrow to get the ball rolling.  Monday through Friday we have appointments at unexpected times to be determined by the VA and the UW Carbone Cancer Center each week.

One of the best things I did is to have Rich sign a sheet giving the VA permission to share medical information with Steph about her dad and let her have input on appointments.

Yesterday Steph took her dad to his first appointments for Chemo and Radiation. I had the day to myself.  I had a delivery, a doctor's appointment, and I treated myself to a hair cut.  
Then I sat outside in a lawn chair after chores and listened to the birds sing while Morris wandered around.  

Life is good ... considering.

Here we go again...consult with Chemo

Apparently our start date was not yesterday.  We awaited a phone call from our Coordinator at the VA in the Chemo clinic that had told us last week that our 'start' date for therapy was going to be Monday.

The frustration of waiting two days for conformation was exhausting. Not only that, it made planning anything very difficult.

However, Monday has passed and we have appointments today to check the PEG tube aka Miss Peggy.

So we look forward to today.  Today we may get more concrete information as to what THE Plan is.

We can hope that today is the day that they lay out the plan for us. Otherwise we could be pretty disappointed.

Anger Emotions Tired Changing

Pretty much, the title says most of it all.  We are going day by day now, one day at a time.

Treatment was supposed to start on Monday.  I made phone calls to the Coordinator of Care at both the VA and the UW Hospitals and they both concurred on this.

We were told that we'd get called by Thursday or Friday at the latest. I spent Thursday doing things around the house.  By late Thursday I took a short walk into the woods while Rich slept.  

His surgery from Monday was still bothering him.  He couldn't pick heavy things up or bend over easily, but we were learning how to flush Miss Peggy the PEG tube.  It looked to be healing quite well.

By Friday morning I was tired, so bone tired that it felt like it took all of my strength just to do the chores.  I didn't mind the rain.  But I did mind feeling as though I were dragging and elephant along through the mud with me.

I'd been reading the literature sent to me by the Caregiver Coordinator from the VA.  I was suffering some Caregiver burnout and here we hadn't even begun to start the 'tough' stuff.  How in the heck was I going to make it through weeks of Radiation and Chemotherapy and be kind and understanding?

Could I do it?

We'd already been seeing that in the fact that both Rich's emotions and mine were running wild circles around each other.  He'd be up, I'd be down. 

I wondered if I was truly going to be up to this task before me.  We still had no true idea of what we were getting into.
We'd heard a lot about 'how tough' things were going to get or 'could' get, or 'might' get.  It all depends on the individual.

Enough was enough.  Rich asked me if I wanted to go car shopping.  I jumped at the idea as it was better than sitting in the house thinking gloomy thoughts on a gloomy day.

We went to LaCrosse and took care of our transportation issues. We have been frugal folks for years and we had decent vehicles but the Subaru was having mechanical issues.  In fact it seemed as though they were going to be non-stop at this point.  Fixing it completely would be about as much money as it was worth.  It was 13 years old.
Rich did something I never expected him to do ... not ever.
He bought me a brand new Red XVCrosstek made by Subaru.
He made it clear that he was buying me a new car.

It may seem very imprudent to those who don't know us.  But traveling 190 miles a day was going to be too iffy with our aged vehicles.  

We were both exhausted when we got home from LaCrosse Friday night.

This morning I was getting ready to go outside and do chores while Rich was talking to his mother on the phone.  She must have asked something about the PEG tube.

Rich replied that he had to flush it ... then he had to do some more reading about it.  We both had some questions for the doctors on the follow up appointment.
He then said, "Well she doesn't help me at all, she says I'm on my own, ... ornery old heifer! Yep, here I am, left like an old sheet hung on the line to dry..."

I closed the door and stepped outside.  I was fuming.  How dare he say that?
I did the chores and filled water tanks along with buckets.  I moved bales and prepared everything for the evening chores.  I had to go do a 12 hour overnight shift and he was going to have to work through chores on his own.

When I got back inside, I'd calmed down a bit.  I was still ready to bite someone's head off.  But I held my tongue.

Rich picked up the menu from Iguana's Mexican Street Cafe and asked me a question about what pico de gallo was.  I gave him a stare, it could have probably peeled the paint job off from our new car that we would pick up Monday night.  
Iguana's Mexican Street Cafe is owned by the fellow who sold us the car, it is his and his wife's business.  

He must have figured it out.
"What?"
I grimaced, "Do you have to be so mean about it?  I don't help you at all? What about what I do here, what about," ... I tossed my hands in the air.

His mouth formed an "O".  Then he nodded.
"I'm sorry," I said, "I just with all of this..." I shrugged.
"I know and I hope you know that I was joking, I was kidding."  He thought for a second then said, "With what we are going through, I'm guessing we are going to go through a lot of this.  Boy, it is going to be hard."

We.  We are going through.  That was the key.  It wasn't just him, it was us. In a way it was changing our relationship and I think for the better in some ways.
We were beginning to think more of each other's personal feelings.  We were recognizing our ups and downs.  We were changing, our marriage was changing.

Today he meets PEG & Other Thoughts

Rich left for Madison this morning.  
He has surgery to put in his PEG or also known as Percutanous endoscopic gastronsonomy tube.

This is for later on for when he has trouble swallowing due to the Tomo Therapy aimed at the cancer tumor in his throat.  It is a procedure that is not difficult but will require him to stay overnight at the VA hospital.  He was told he could drive himself and then come home at some point after release tomorrow.

It is a big step for us.  I say 'us' because we are both going through this.  No, I do not have cancer and I do not have to go through what things he is going to go through.
But I am his support and his wife so every step of the way feels as though it is also happening to me.

I spoke to one of the Veteran's Wives support Social Workers today and she told me that this was an okay way to feel.  It was a 'we' not a him. Although he would have the procedures it was important that I be his back up.  Well that is how it has always been with us.

I took the day and cleaned closets, and sorted things.  It was a good day to be busy inside and try to organize all those things I've been meaning to take care of.

It feels oddly quiet around here and pretty peaceful.  I am having one of my first days of not having to worry about what is happening to him.  Well, not entirely after all he is having surgery.
I almost feel guilty for having a day to myself.

Margarette [Veteran's Wives Social Worker] told me it was important as a Caregiver to take time for myself.  She is sending me a packet of information regarding Support Groups for me.  There is even an online support group just geared for wives who are married to veterans with PTSD.  I can sign up for a 'Caregivers' course online and learn some coping skills.  I wished I'd known this a few years ago.  After treatment is over, I can become an 'Alumi' and stay with the group.
I 'read' this from her conversation, that I too support others with experience gained from cancer treatment and dealing with severe PTSD.

I am very willing to do this.  

I may even be able to get some 'respite' help if things are difficult and I just need to do some me things.  This would come from my local county Family Services.  
I told her that I had a good ... and very small rural community that has already reached out for some of this along with Rich's daughter.  I started developing a community support group as soon as I learned his diagnosis.

I explained to Margarette that one of my self care things to do was hike, take photographs, be in nature, and ride my mule.  I told her this was something I'd discovered early in our marital relationship and that Rich sometimes resented it, but also understood it.

My biggest concern was not knowing how things were going to go.  But knowing I have people I can call on and even talk to via the internet is a relief.  Whew.

Steph, my stepdaughter is on board with me.  I can't say enough how supportive and helpful she is when I call her up and just complain and babble.  She listens and she understands.  After all, she grew up with Rich being her dad and developed her own coping skills.

My neighbor called this morning and asked if I could watch her kids tomorrow night...what a delight, I love doing it.  I told her that I would be alone this evening and perhaps I could walk up to her house and we could just hang out a bit....and she invited me for an early supper.  How excellent, because I just opened the frig and for the life of me, could not figure out what I might even think of having for supper...!
People can be awesome!

See?
I am working on me.

Oh.  All the chores went smoothly in the rain and cold.  I just went out and did it with my mind on chores and the worries of all other things sort of melted away as the Dexter Cattle bellowed, the mules and donkeys brayed, and the hound dogs barked.

Mask Day

4-15-15

Not Tax Day.  Well we were not thinking about that at all.  We had appointments for the 'mask'.  I'd looked up what this CT mask was all about but still wasn't quite sure how it would be used.

Jackie the coordinator met us in the waiting area and sat us down for a conversation.  She began by explaining how the 'mask' would work and how the treatments would be coordinated.  

Rich told her the 'the guy nurse' from Oncology at the VA said that this would be a 'calk walk' for Rich because he was a Tough Guy.  And that the feeding tube couldn't be put in right away because they didn't have openings.

Jackie's eyes grew a bit large and she said quietly.  "No Rich, this is no cake walk.  It is going to be rough and tough, there will be some bad days, but we are here to help you make it through it.  Your throat will become so sore as to be nearly unbearable at times.  Your mouth will get dry, you will get thick nasty mucous.  You will get tired and feel drawn out..."

She then began to explain how we'd attack these issues head on.  Salt/baking soda/water rinses.  Special mouth wash, special creme for his neck, ... she went on to explain how to take care of the mouth and how diligent he had to be about his teeth.  

Rich asked her how sick he'd be from chemotherapy.  She said that the strength of the chemo is not the same as they would administer for something like breast cancer.  He wouldn't lose his lovely hair.  She smiled and wanted to know where I stood in all of this.

"I am his back up support.  I've got his back," I said.  Rich glanced over and smiled.
"Yeah, she is."

Rich then left for the 'mask' fitting.

Jackie asked me if I had questions.  
"Oh sure I do, but I don't know what I am getting into."  I nodded at my husband who was walking down the hall, "He really needs a lot of care, more than he thinks and I mean that... before he was diagnosed."

Jackie nodded to herself as if making a mental note.  She said her card was inside the binder she'd left me and if I ever needed her, I could call.  She also assured me that she would see us often during and after treatment.

I read through the booklet that Jackie left us.  There were blender recipes and articles on self care.  
I decided I best start by studying everything they had to give me.  I was facing a potentially very long uphill battle.
Don't get me wrong.  I love my husband, but he really isn't as tough as he thinks he is.

I'm not tough either.  But it looks like I better start working on it.
....And my Mask too.  

D-Day

From my journal April 10th

Well it wasn't really D-Day as in reference to the invasion of Normandy. But Rich used it as slang to describe how we were feeling on our drive in to Madison.

We had to find the WIMR building and that got a bit tricky.  We first pulled into the UW Hospital and Clinics parking area.  After asking a valet parker where the heck we were supposed to go, we were directed to the infamous Lot 74.

We had been instructed to park in an slot assigned for PET scans.  It was raining softly and we hurried across the lot to get under the canopy for the building.

We stepped inside and I tried to read the instructions on how to find where we were to go to check in.  Someone stopped and helped direct us.  
We sat quietly in the waiting room.  A tech came and got Rich.  She told me it would be at least an hour and 45 minutes before Rich got back.

I read a National Geographic from cover to cover.  I played a game or two of solitaire on my Kindle.  Then I twiddled my fingers.

Soon enough Rich came through the doors, he'd taken his med for anxiety to help him relax.  He is claustrophobic and he gave me the thumbs up.  The tech said he did very well, he slept through most of it.

We decided to go to the cafeteria and get something to eat before we headed over to the Carbone Cancer Center to meet with the Radiology Oncology people.
Getting lost in the UW Health system in Madison must be a regular thing. We had people guide us from one place to another.  

Nervously we sat in yet one more waiting room.  We didn't have much to say.  The question on both of our minds was simply.
Where was this Stuff?
Was the news good or bad?

We didn't wait very long before a male nurse got us and took us into an examination room.  He went through Rich's vitals and then went to get another doctor.  That doctor came in and actually had the honor of giving us some good news. 
The cancer had not spread.  It was local.  In the left tonsil and in the left lymph node.  It wasn't anywhere else.

Then Dr. W. came in.  He affirmed the PET scan findings and put the scan from the CT and the PET up on the monitor to show us exactly where the cancer was and how it was first discovered.

Our relief was overwhelming.  Dr. W. then delivered the next part of the news.

A treatment plan.
So far as he could see it, Radiology would be 5 times a week.  Chemotherapy would be once a week.
A mask of Rich's head and neck would have to be made so they could program the Radiation Treatments and tailor the treatment for his therapy.

The treatment would be Tomo Therapy.  I could see that Rich's spirits were lifted as well as his attitude.  Dr. W. expressed concerns about our long drive.  He felt it would go fine for a few weeks but then we might want to consider staying closer to the hospital.  
He gave Rich the broad over view of what to expect during treatment.  He included the fact that the throat would get so sore that eating would be darned near impossible and he would have to have a feeding tube.  

He cautioned also that no matter how awful it was to swallow, it was important that he do so and they would help with meds to make that possible.
He cautioned that things would get pretty tough and pretty nasty and that even tough guys had really bad days with this treatment.

Then I will never forget Dr. W. leaning over Rich and touching him on the shoulder.

"If you stick with me Rich through this treatment, I will cure this cancer."

I sat stunned in my chair.  Did I just hear that right?  Wait, wasn't cancer incurable?

Dr. W. went on to explain that Cancer was a big bad name that encompassed what he felt were thousands of 'cancers'.  Every cancer was different.  This cancer had the HPV-16 'marker' which had a better rate of cure and survival.  This cancer had been caught early.  He felt good about the outcome.

We made it back to the car and Rich handed me the keys.  It had been a very long day.
We made it through D-Day with a prognosis that was good.
Well, good for us considering.

The sun was brighter, the sky was bluer, and Hope not disaster filled our heads.

After the Teeth Pulling & PET Scan Notification

From my journal April 6th

Crazy.  Our days and nights have been a bit of hell.  Rich sits and stares out the window.  He goes from being angry to being sad and depressed within hours.

He won't admit it, but the oral surgery did hurt and he'd refused meds for the pain.  Tough guy.

I've made shredded meat stews and other easy to eat foods for him.  I avoid the chips, a food he loves.  I suggest he try and Oreo cookie dipped in milk to soften it.
He waves me away.

"Life sucks," he finally says to me.  "I should just ...," he stops and says nothing, then gets up and walks out of the room.

I try to get him to watch a program on Netflix.  He shakes his head and mumbles that he is going to nap.

I need to go to town and get some ice cream perhaps to cheer him up.  My Grandmother always said that Ice Cream was the cure for everything.

I have a list of simple groceries to get.
I park in the Jubilee parking lot and am suddenly overcome by grief or emotion.  I sit in the Subaru unable to move.  I want to cry I want to scream and throw things, I want to be... I don't know what I want.

Tears slide out the corners of my eyes.  I wipe at them and stare off for a bit taking breaths.  
Why should I be upset right?  What right do I have to be emotional?  I do NOT have cancer.  I am not the one who has IT.

My mind goes blank and I wait for a bit to get things under control.  I step out of the car and shut the door.

I start towards the store.  When I get inside I cannot recall what I was there for.  
I grab my list out of my pocket and find myself wandering around somewhat aimlessly.

When I come home with ice cream Rich's face lights up like a Christmas Tree.

The phone rings and it is the UW Hospital calling.  They have scheduled the PET scan for the 9th of April.  A nurse will call us with details later.


Well there we go.  We made another day.

Outside I find a beautiful crocus that has opened.