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."

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.

Divorcing Miss Peggy

7 Weeks out of treatment!

Things are starting to turn around the corner and come back towards a new normal.

Rich feels like doing more things, like mowing the pasture weeds down, doing light yard work but the recent heat wave along with a lot of humidity has dampened his spirit.
He feels like he has the whole summer to catch up on.

Indeed in many ways he has weeks of 'life' that he sort of missed while being in treatment.  Chemo was no cakewalk as was the radiation.

July 27th was the day scheduled for the removal of the PEG tube.  In the beginning, we'd decided to call this tube 'Miss Peggy'.  Rich had said that if he had to sleep with the damn thing it was getting a name.

And he gave it a woman's name, he said, because 'she' was such a pain to look after and was always getting in the way.

I had to go to work and Rich had said he felt strong enough to drive to Madison and back on his own.

The PEG tube was in place in case Rich lost the ability to swallow, which often comes with Throat Cancer treatment.  The throat gets so intensely sore and painful it becomes impossible for some patients to swallow even pureed food. But he was a determined soul and we never had to use the feeding tube.

The withdrawal of the tube was painless he told me.  He met with his psychiatrist afterwards.  Dr. Cordes is an interesting person.  He is blind and in some ways I think that makes him more perceptive to Rich, he doesn't see the body movements that Rich uses while he communicates but Dr. Cordes can hear the inflections in his voice.

Dr. Cordes greeted Rich and Rich happily announced to Cordes that he'd finally gotten his divorce.  Dr. Cordes was temporarily thrown off as his mind wandered probably to all the meetings that Rich and I had gone to together.

"A divorce?" he asked.
"Yes Doc, from Miss Peggy, my feeding tube."

Rich explained that he and Cordes discussed his recovery and told the Doc that he still felt he wasn't doing 'good enough' even though everyone was telling him that he was.  Dr. Cordes suggested that Rich do what everyone else around him was doing...giving him a pat on the back.  Rich should stop and give himself a pat on the back.

In my observation, I told Rich that he was actually more active now than he had been in a year.  He worked outdoors for longer periods of time and got more 'stuff' done.

I wonder if the cancer that had been growing there for who knows how long had been a part of his continous exhaustion last year.  We'd addressed it as a possible depression issue, but what if it had been 'THE' Cancer?

I guess we'll never know at this point.  And really we both don't care.  Rich's attitude is so fantastic, even though he still has daily pain in swallowing, that we have no doubt in our heads that he is cured and better.

Of course the PET scan in September will address that issue for us.

Miss Peggy has exited our life.  No more flushing 'her' and for Rich, she no longer gets in his way.

It is a good thing.

One Month Follow Up!

Today we have the one month follow up with the Radiologist Oncologist, Dr. Witek.

We skipped the two week follow up as Rich was doing well.
Swallowing is still painful to him and he still takes a pain med in the morning to help with that.

I think we can say goodbye to that soon enough.
Eating bread is still difficult as the saliva glands are not producing like they once did.
We don't know if that will all come back or not.

Last night we ate steak, sliced and fried potatoes, and salads.  A very normal meal.  This was something I never thought would happen again [in the third week of treatment].  I think Rich is healing well and actually getting back into the swing of things much faster than anyone imagined.

He has always been determined that 'this' was something he would conquer and I think that attitude helped him greatly.

What happens next?  I guess we wait for the PET scan to see if 'all' of the cancer was eradicated and move on from there.

Last Day of Radiation

I can't believe I let June 15th come and go without mentioning it here.

Monday the 15th, was the last day for radiation or TomoTherapy as it is properly called.
Rich's daughter Stephanie came with Dennis and Ariel so we could all be together for the 'event'.

We kept things pretty low key while in the waiting room.  I've watched and waited for nearly seven weeks for this day to come and I notice that other patients were very quiet about their last radiation treatments and we followed suit.

We ran into the 'woman' we met last week as Rich came out of the treatment room.  We hugged and I heard her first name called by the nurse.  She was in day 14, she had just finished her 3rd chemo.

She told me that she still had my email address and 'almost' wrote to me.  I shrugged and said, "It is there if you need it."

Nurse Jackie took our entourage down the hall to Dr. Witek's exam room.  Dr. Witek came in and looked around.  Oncologists often see the family with the patient and they say the better support a patient had, the better the outcome.

Rich introduced everyone and then Dr. Witek examined Rich telling him congratulations on filling up the paper...meaning, making all of the radiation treatments.
He then turned to the kids and said "This is going to be fun, watch me try and look into your Grandpa's mouth!  He can't stick out his tongue and say AHHH at the same time! It is pretty funny!"

Rich wrapped a piece of gauze around his tongue and pulled it out.  Dr. Witek looked surprised and took a look into his mouth at the tonsil that had the tumor.

He stood back and laughed.  "Rich, you are a man of your word!  It looks good! Nothing there I can see.  The lymph node has shrunk.  If I had to flip a coin I'd say we did it."
He paused.
"Of course cancer is an interesting thing.  There is always the chance that we didn't get one or two stray cells okay?  But I'm thinking we got it. We'll do a PET scan in 3 months because otherwise your radiation will 'heat' up the PET scan and give false readings.  Questions?"

"Should you take my tonsil out doc?" Rich asked.
"Good question and no we won't unless that happens to be a last resort if the cancer came back.  Too much possibility of bleeding and risk. Oh and I think your PEG tube can go in a few weeks too."

"Yes!" Rich exclaimed, "I can get rid of Miss Peggy!"

We finally left, our whole group was feeling elated.  Rich could still eat almost normally but the pain was there.  He still aspirated often while drinking water and the coughing fit he had afterwards was quite awful.

If someone had told me a few weeks ago that I'd be walking out of the UW Carbone Cancer center with Rich feeling pretty good and able to walk, talk, eat, and drink...I'd have told them they were absolutely nuts.

We went out to celebrate with the kids at Perkins and on the way home I took a detour and went to Old Hyde Mill to take some photos.

We got home after 5pm and took naps.  I was emotionally exhausted yet happy. No more daily radiation appointments.

Let the follow up appointments begin.

Throat Cancer a bit of a review

Today Rich sort of had a pre-celebration regarding his radiation treatments.

Only one more to go.

This is a photo from his treatment room ... he is in his mask and the tech put his sunglasses and hat on him.

On Wednesday, April 29th 2015, Rich had his first radiation and chemo treatment.
That was 32 treatments ago.

It was inconceivable that we'd ever see the end of radiation or chemo.  But now that last day is looming on Monday June 15th, 2015.

Even last week we felt like the 'end' was still so far off.

Some things to remember about radiation therapy.  The side effects don't quit on the day the therapy quits.

The side effects can show up later in life in many various ways as explained in detail by Itzhak Brook MD in his book My Voice: A Physician's Personal Experience with Throat Cancer.

If you read the book or review it at this link you might wonder why on earth would anyone want to go through cancer treatment at all.
It is pretty simple.
The patient wants to live longer.
It is simple.  Without the treatment the options are only one.
A slow and painful death.
We go for the treatment to up our odds, to gain some years with loved ones.  Or because we feel deeply that we can be cured and look back on the treatment as a huge hurdle in life.

How do we feel today?  Optimistic.  We may or may not have 'beaten' the odds. We don't know what the eventual outcome is, but we are looking for it to be positive.

This journey is not over.  We can't just wave goodbye to a several weeks of treatment and pretend it never happened.  The whole process from the diagnosis through all the ups and downs of chemo and radiation has changed us.

It isn't HIM who has cancer.  We know it is him, but it is we that went through it together.  
The word we includes his doctors, the nurses, myself, his daughter, his son in law, the grand kids, and yes, even the dog.  

Neighbors who have helped with meals, mowing yard, coming over to move round bales, my eldest son who came out and worked to help make fencing and clearing the area under the electric fence with a weed eater.
My youngest son, who sent photos and videos of his children to make us laugh.
Our dear friends who came to visit from Missouri and brought their newborn to cheer up Rich...
the list is endless and keeps expanding.

Gary, the broken down old soul who washes car windows at the gas station we stop at day after day.  A nameless person until Rich and he shared cancer stories.  Gary ~ the guy who gave me a hug when he thought I needed it.  And yes I did need it.

Our journey is far from over.  We have cleared the first hurdle and feel a bit more stronger to try and get over the next one that is tossed at us.

Today we fight the radiation burns on his neck.  I gently rinse water to slough off the dead skin.  I reapply Silver Sulfadizine carefully. This process can take up to an hour each time.

We get tired and short with each other.  We laugh and hug.  I tuck him in at night.
Sometimes we walk around each other like two cats preparing for a fight.
Other times we walk together holding hands.


So we have hope and we have love.  We have changed in some ways.
And we remain the same people in many other ways.

It is hard to explain.

But we look forward to each new day.
Because we can.

Swallow Testing, Throat Burns

From June 11th

I took Rich's temperature, it was still low grade and his neck looked pretty nasty.
He didn't want his meds yet again.

I sighed and dropped the phone next to him and told him he could call 911, or the Triage Nurse at the VA.  I rattled his truck keys and set them down within his reach. 

I informed him that I was doing chores and would be back in a bit.

I returned to the house to find that he was going to co-operate.  He took his pain medicine and started to feel better right away.

I washed his hair and cleaned up his neck wearing surgical gloves.  I would ask to see the nurse today when we got to the UW.

The drive for the appointment was fairly uneventful except for the heavy downpours of rain that we encountered.

When we arrived at Radiation, Rich asked to see a nurse.  Nurse Jackie of UW wasn't available so the other nurse came by.  She looked at Rich's neck and said something needed to be done...but she was pretty sure that she couldn't get Silver Sulfadiazine approved unless Dr. Witek saw him and that would not be until Friday.

I asked her about his low grade fever and insisted that she get some answers regarding his neck burns.
Around the corner came Nurse Jackie.
She took one look at Rich's neck and grimaced.  She said she'd call the VA Infusion Clinic and have the Silver Sulfadizine ready for us in about a half an hour.
She also explained that a low grade fever was common during the last few treatments, but we had to really keep an eye on it.

Boom.  Now I know why Nurse Jackie is in the position she is in.  She is quick, to the point and can get things done not only at the UW, but the VA as well.

To anyone going through any sort of treatment.  Use your resources, advocate, advocate, and advocate.  If something doesn't feel quite right, ask.

We then went to the VA and saw Dr. Faris, then we went on to see the SOP, Swallow, Oral, Pathologist.  She took a long time to discuss swallowing issues with us and went as far as drawing a picture of the throat and epiglottis for us.  She explained that with radiation the epiglottis can get swollen and deformed causing issues with certain kinds of swallowing.

When we got home I was able to apply the cream and Rich said it was soothing to his skin and the burns.

It was a good day and we sat down and ate a nice supper that one of the neighbors had prepared for us.

This morning, the 12th, he is feeling much better.  His temp is nearly normal, and we are getting ready to clean off the neck.  We cannot have any of the cream on his neck during radiation.
It looks rather ugly right now but he says it feels much better.

From what I understand the last few days of radiation and beyond can be the worst.

A quote from another patient:

"Radiation, the gift that keeps on Giving."

Adventures with Cancer...

It seems each day in the treatment of Throat Cancer is a day of some kind adventure.

On our way home yesterday we took a few side trips to look at Rich's old 'fishing' haunts.  I played chauffeur and he gave me directions.

We stopped in about 4 places and I think he enjoyed it. We talked about maybe coming back soon with fishing poles and taking a turn at tossing worms into the Wisconsin River.

We discussed driving over on County H just outside of Lone Rock to see the old Mill too.  

The day was incredibly hot though and of course I played mother hen and cautioned him about the heat and the sun.

His neck has been burning up from these last radiation treatments.  Two days ago I asked if this was normal and the techs replied it was.
Last night I looked at his neck as I gently cleaned it.

No, this was something that concerned me.
Then Mr. Stubborn decided not to take his pain medicine even though it hurt like heck...no it hurt worse than that. I could see his arms shaking.  He turned white as a ghost but told me to continue.

I asked him to take his Oxycodone.  He refused saying he didn't wasn't to 'get hooked' on it.
I explained that the pain would make him feel more ill.

Nope.

I used Aloe gel on the burns and decided on Thursday that I'd stand in the waiting room until I saw THE nurse. 
In the beginning I was told we'd have nurse co-ordinators to see us whenever we had a question or concern.

Rich went to sleep and assured me he'd be fine while I got Morris.

When I got home, Rich said he hurt worse than ever.  I asked where.

"All over."
I tried to get him to tell me, was it his throat, the radiated skin, or something else.
When he gets like that he remains staunch and won't tell you a thing.
"I just hurt."

He then told me he was cold.  I took his temperature and it was 99.  Low grade.

I tried to get him to eat or drink.
"NO."
I tried him to take some Oxy.
"NO."
I tried to get him to take his proper medications.
You guessed it.
Nope.

At 10pm I checked his temperature. 100.1, at 2am I checked his temperature 100.3.
My list from both the Infusion clinic and Radiation clinic specifically tell the patient they must be seen by a doctor with any temperature of 100.5 or more.

Morris laid down next to Rich on the floor and put his head in his paws.  He was worried and watched also.

After trying to get some sleep on the couch or the recliner, I finally gave up and went to the upstairs bedroom.

I normally get up at 6am.  I'd check his temp then.

~~~ Follow up in the next blog.

Dragging our Feet

The last day of radiation is supposed to be Monday, June 15th.  The first day of radiation and chemo was on April 28th.

What a long long time.
I'm sure it is not as long as some folks have treatments for other cancers.

For me?  I am getting close to never caring if I drive again to Madison, or park in the UW's parking garage or even see the doors to the VA Hospital.

I am weary of the drive.  Even with the short breaks while Rich was in the hospital or those times when his daughter had him, it feels like it has been forever.

Which, of course is not true at all.

Rich's neck looks nasty and it is hot as mentioned in the previous post.  We've been applying lotion and cool compresses to try and ease the burning sensation.

Eating by mouth is a bit of a challenge, but he is still doing it.  Yesterday we had a great lunch at Grandma Mary's in Arena, WI.  

We often stop there on our way back from Madison as it gives us a break.

This morning was a tough one so far.  Neither one of us wanted to get up and get going.  I'm still delaying going out to do the chores.  I'm bone tired in some ways I feel beyond tired.

Rich feels the same way and his neck just burns.  I put lotion on it and he sat still.  I'm using gloves now even though I've washed my hands well.  I don't want to cause an infection anywhere on his neck by accident.

Dr. Witek says his neck will keep cooking for a while after radiation is done.
I've read on message boards that this time [depending on the person] can be up to 6 weeks.

They say: 'Radiation, the gift that keeps on giving [or burning]'. 

I guess the positive things to look at are ... the daily trips are nearly over.
Radiation is nearly over.

And then what?
Life after treatment?
Will our lives ever become normal again?

Oh I hope so.

Chores are waiting.  And we leave for another day of 'fun and adventure' in an hour.

Tonight though, I'm going to go pick up Morris and bring him back home.
We need his silly face.

Stop being a mother hen

My oldest son Ed, came to help do 'stuff' around the farm on Saturday.

We finished the fencing and then Ed used his weed eater to clean around the fence line. 

Rich had decided to get on his lawn mower and do some yard work.  I worried and fussed over him until I got 'the look' and decided to let him do as he pleased.

No doubt he is feeling a bit better.  The throat is sore and raw, but with careful meal planning he is still eating 'normal' food.

After last weekend's TIA, he is now wearing a 'Cardiac Event' monitor.  It is made by LifeWatch and it records any events that may occur.  
While Rich was cleaning the deck of the mower, his 'beeper' as we call it went off.  We dutifully went inside and transmitted the 'event' by phone to the 800 number provided.
The technician asked Rich what he had been doing when the 'event' occurred and then will pass this information on to the doctor who is following him.
Later he had another 'event'.  
We don't know what the 'events' are which sort of concerns me.

I assume the tech would tell us if we needed to go somewhere for help.

Rich had another 'event' while sleeping at 6am this morning.  Stubborn ol' cuss.  He said he was going to sleep and not get up to send out the event recording.

Well.  On the flip side, he has been getting back to himself and aside from the difficulty in swallowing, and the very hot skin on his neck, he is doing better.

He is wearing a wide brim hat with a scarf over the back to keep the sun off his radiated neck.

It is good to see him taking an interest in things going on around the farm.
5 more days of radiation this coming week and then one day the week following.

He hopes that he will start to recover the swallowing process soon.
Although we've been told that a person's neck will still 'cook' for weeks after radiation treatment is done.

I kept after him all day to 'take it easy'.  Then I realized that after what he had been through, I should stop being a Mother Hen and let him decide what his activities should be.

No More Chemo?

Promptly on Monday the flurry of appointments began.

The hospital had done a CT scan of their own along with an echo-cardiogram, X- rays, and many blood draws.

People came and went from his room.  We commented on the fact that we felt the door should just be revolving.
The Neurologist was leaning towards a TIA or what they call a 'mini-stroke'.

No progress was made other than testing and more testing on Monday.  

Tuesday rolled around and when Stephanie and I got to the VA we found that Rich had been whisked off to his appointment with a Dr. Faris who specialized in Psychology.

Steph stayed at the room while I ran down to Mental Health to see if I could catch up to Rich.  
I found him sitting in a wheelchair with his green pj's on.  He looked sad and a bit displaced.

When Dr. Faris came for him, I wheeled him into his office.  Rich asked me to stay and Dr. Faris asked Rich if it was okay that I be included in the meeting. Rich nodded and said something to the affect, that I was always included in all of his mental health interactions.

Dr. Faris works with Veterans who often have major health issues along with PTSD.  Apparently he works quite a bit out of the 'cancer' clinic.

I sort of secretly wondered why we hadn't been seen by him from the get go of the cancer diagnosis.

We talked about health care, we talked about what Rich wanted and needed and we even talked about how the cancer treatments had taken over his life to the point where he felt he had absolutely no control over his life anymore.  How he felt that he was just priming for the next chemo treatment and wondering how it would affect him.
Truly this regime of 33 radiations and 6 chemotherapy infusions done at the same time was brutal to anyone.  Emotionally it is tolling to those who don't have mental health issues.

I raised a question which had been on my mind.

"I wonder if you have had enough Chemotherapy to be effective for your treatment?  I wonder if not having any more chemo would change the quality of your life?  Is this a question you would like to ask your Chemo Doctor?"  I asked Rich, while holding his hand.

Dr. Faris thought this a valid question and could not offer an opinion on it but said it wouldn't hurt to ask.  Sometimes the quality of a person's life outweighs the treatment that is being given.

Stephanie and I had talked about this in great length on our trips back and forth to Madison since Sunday.  
When was enough enough?

The past 3 weeks had seen an Anaphylatic reaction that ended in hospitalization with a severity of 4 out of 4.
A mental health breakdown which resulted in a 4 day stay -- and thus this meeting with Dr. Faris.
A TIA that he was currently being tested and run through the mill for, with another 4 day stay at the hospital.

Dr. Faris let Rich and I discuss the issues and weigh them.  Rich brightened at the thought of no more chemo.

Our next appointment was with Dr. R. the chemo/oncology doctor.  I'd grown to respect and really like this doctor.  He was extremely compassionate and always prepared to answer questions.  He was supportive of using a voice recorder so we could review our discussions.

Dr. R came out to the waiting room and ushered Stephanie, myself, and Rich into an exam room.
That was a bit unusual in itself.

Dr. R, looked at Rich then at us.  He said he'd just reviewed the latest notes.  He looked at all of us and then address Rich.
Rich was exhausted and tired of being rushed from one appointment to the next.

As a family, Steph, Rich, and I asked some questions about the continuation or end of chemotherapy.
We talked at length and Dr. R said he had no issue with stopping chemo at this point, Rich had done over half of the therapies and with all of the reactions he'd had and other health issues, he felt that this would not be a terrible course to follow.
The tumor in the lymph node was gone and he felt that the one in the throat was nearly gone.  The chemo along with radiation had been working very well, but there was the patient's comfort and quality of life to consider...ending chemo?  It may or may not change the final outcome, but...

Of course that had to be the patient's decision.

I held on to Rich's hand and Steph was close to him on the other side.  Rich felt that an end to chemo would be in his best interests mentally and physically.

We would continue with the radiation treatments and then Dr. W the Head and Neck Oncologist from the UW along with Dr. R would then put Rich on monitor 'mode'.
After he had healed some from the last radiation, they would follow up with a scan and then continue to monitor Rich.

I can say this.
This decision immediately showed up in Rich as a catalyst.  His mental outlook, his physical being began to show immediate improvement.

No more chemo?  That was good with us.
In fact it was the uplift that Rich needed so badly.

And it showed as he hammed it up for me just before being released from the hospital.

When we got home that night, Rich used his cane and we went for a walk to see Speedy, the new bull calf.

This was a first.  He had energy and a positive outlook for the first time in many weeks.

No more chemo was a good decision, no matter the end result.

911 ~ What is your emergency?

5am on Sunday morning I awakened to hear a noise of someone trying to open the bathroom door.

That was so odd.  I was sleeping on the couch in the living room so I could keep an eye on Rich.
Apparently I was so exhausted from last week's events and Rich's hospitalization that I hadn't heard him get up.

I didn't grab m glasses, but ran to the door and opened it.
Rich was at the door desperately holding onto the door frame.

When he spoke, he sounded scared and desperate.

"I can't feel my right side," he said, his voice was a bit higher than normal and a bit slurred.

I can say that a multitude of things ran through my brain and they ended back up at the same place over and over.  

Stroke.

I put my arms around him and felt him shaking and trembling.  He couldn't move his right foot nor help at all with his right hand...the arm hung useless at his side.

I looked around and said to him, "I'm going to need you to hang on with your left hand to the door frame and I am going to help lower you to the floor, okay?"

"I can't move," he said, it was nearly a cry.  

"We need to get you safely to the floor, okay?  It is the only way I can call for help."  I grasped him tightly under his armpits and somehow we ended up on the floor.  I had no idea how I did it, but he was now safely on the floor.
I grabbed a pillow from the couch and laid his head on it.  I made sure he was laying on his side.
Somewhere in our yearly training for medical emergencies, I recall that we were supposed to lay a person on their side ... 

I jumped up and grabbed my glasses and dialed 911.  

I also grabbed a blanket to cover Rich in.  He was still moaning and crying. I knelt by him as the dispatcher answered.

Thank goodness, I was sure that it was the dispatcher who had grown up only a mile or so away from our secluded location.  He would be able to instruct the ambulance to our place.

"911, what is your emergency?"

"My husband who is a cancer patient who is receiving both chemo and radiation has no feeling suddenly in his right side.  He is now on the floor, conscious with a steady pulse.  He has complaints of numbness and seems a bit disoriented."
I spoke on the phone but have no idea who this totally calm person was that was talking.  I know it was me, but I didn't feel calm.

Yet.
I had to be totally calm.

The dispatcher asked for our address and I even gave him the letters ... 'E'... Edward...and the numbers distinctly and clearly.  Not a shake or shudder in my own voice.
Who was this person?

The dispatcher hung up and told me that Tri State was on the way.

I continued to monitor his pulse and his breathing and tried to answer his questions.
He was frightened, I tried to comfort him ... and held his head as I dialed his daughter's phone number.

Stephanie answered and I think our conversation went something like this.

"Stephanie, I think your dad may have had a stroke, I just hung up with the 911 dispatcher and the ambulance is on its way.  They will take him to VMH and I'll call you as soon as they have him in the ambulance."

I hung up with her and leaped up to push furniture out of the way.  I unlocked both the north door and the south door.  The south facing door was wider, a stretcher would fit through there.

In between making room I kept kneeling with Rich and holding his head.  I talked quietly to him and calmly to him.  

Fast forward:
At the ER admissions they asked me if I had POA for Health.
I pulled out the huge Estate Book and dropped it onto the counter, then flipped to Rich's Power of Attorney section, next I handed her the Living Will packet to copy.
I couldn't believe I was actually having to invoke POA.  My heart fluttered and I felt the walls closing in on me...
How bad was it?  What was happening?
I took the paperwork back from the secretary and she let me in to the ER room where Rich was 'stashed'.
He'd been taken for a CT scan.  

The attending doctor said the scan showed no brain damage which was hopeful for a full recovery.
He then proceeded to call the Madison VA Hospital to make arrangements to send Rich via another ambulance to there once he was stable in Viroqua.

I called Stephanie and gave her the information.  Still ... this calm person was talking.  Stephanie asked if I was okay.  I replied yes... and was she? She answered yes also.  Then she said, "I'm numb."
I agreed, that was the best description of what I was feeling.

Emotionally detached, yet concerned, and full of an empty numbness.

Steph and I put a plan together.  She'd meet him at the ER in Madison as she was closer.
I'd go home and make arrangements for some neighbors to do the farm chores and have the farrier or someone run over and put a round bale in with  5 mules.

After making arrangements, I grabbed Rich's CPAP, some clothes, his blue folder [it has a calendar with all of the appointments in it], the Chrome Book, clothes for me, Rich's VA ID, and two bottles of water.

I shut the door and started the Subaru.  Then proceeded to take the longest drive of my life.  Twice I had to pull over and regain composure.

On the way in Stephanie called, she gave me her dad's room number and I simply asked.
"I need to stay with you tonight.  No way can I go back to the house, okay?"

By the time I'd made it to Madison, Rich was able to move his arms and legs.  His right eye had some blurred vision and his speech was clear as a bell.

That night after we got to Steph's house and I had some pizza...oh, did I even eat that day?... Hmmm, I don't think so...

After eating I went over and lounged on their couch.
I woke up much later.
And went to bed.

So many questions, so many unknowns.

Chemo and Rad, counting the days

99

Well we were waiting for the lab department to take his blood for anylisis before chemo on Tuesday.  I held the camera at waist level and snapped this, his number was 100.

Today was a good one.  I met him at the infusion clinic with Nurse Jackie.  The mental health 'team' had made sure to 'medicate' him properly so that he wouldn't have an anxiety attack.

This was a good plan.  
Not only that, he was released into my care for the weekend with a heavy schedule for next week.

Thank goodness for electronic calendars, I can enter appointments in them and then can change them as they change for us.  I can make it so his daughter can see the very same appointments.

As of today, Rich only has 10 Radiation treatments left!

Dustin, the RAD tech calls Rich ~ "Hollywood" ~ probably because of the bright colored western shirts he loves to wear and his very cool sunglasses that he even wears indoors.

As of today, I think he has only two chemo treatments left also.

I'm not saying we are out of the woods yet but I can say this, we ARE counting the days left, the treatments left, and looking forward to recovery.

Eating food is difficult for Rich, but he is persevering.  We stopped on the way home from the VA and he ate a large Ham and Cheese omelette along with a large portion of hash browns.  While he was a patient, the nurses kept him supplied with ice cream bars, snacks, puddings, and as many items they felt he could eat.

Throat Cancer Treatment, as told by Dr. R., is one of the most toughest regimes of cancer treatment to go through.  The patient has to face a daunting regime of up to 33 radiation treatments to the throat, along with 6 to 7 chemotherapy treatments.
Nasty side effects are things like destruction of the saliva glands, which may or may not come back.
Foods may never taste the same.
Some people lose their ability to swallow food and have to be feed through a PEG tube while taking physical therapy to try and get back their swallowing muscles.
The skin on the neck becomes tender and hot.  As I've heard folks describe it on Cancer discussion boards, your throat 'cooks' for weeks after radiation stops.

There is weakness and extreme fatigue.  There is an emotional roller-coaster ride for both the patient and those around him.

But the results are often very encouraging.  

We keep looking for the positive outcome.

So today we rejoice because Rich is home for the weekend and so far he has been sleeping comfortably on the futon his daughter and her husband brought today.
We re-arranged the tiny living room so he would not have to negotiate stairs at night to use the bathroom.

Tonight we end on a good note.
All is quiet.

One more day.

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?

The not happy side of Care Giving.

I had an interesting talk with my stepdaugher...oh hell, let's just say she is my daughter.  For all the help and support I've gotten over the years she is as close to a biological child as I could get.

Sometimes I wonder how I'd get through things without her.  I know I can call her and blow steam off.

Last night we discussed how dramatically different Rich will be with her or the nurses and staff at the UW and at the VA.

He charms their pants off.  Smiles, agrees to what they tell him, jokes around and stops to talk at length with other veterans.  All in all what I see in public is a well rounded happy person who is dealing with cancer of the throat.

Suddenly the tables turn when we walk in the door.  He becomes angry, frustrated, and will lash out if I ask him if he is going to 'flush' his PEG tube.  He seems to get confused and can't recall what the doctors told him and WHY they told him these things.

I pull out the handy voice recorder and offer to play it back for him and he gets angry again.  
He tells me I'm a nag. He makes a 'face' at me and gives me the look.
Finally he just tells me to ...
just leave him alone.

I try to let things just roll off my back and try to remind myself that these are just words and that he is the one with the illness.

And then there it is, the little nag in the back of my brain that is mean.  I want to lash out and tell him off.  Let him have some of his own medicine.

Make your own bed, make your own meals, take care of chores, bills, if you know so dang much do it yourself.  If I can't do anything the right way then fine,...I quit.

But no, I don't do that.  

Somewhere there is an end and treatment will be done and there will be a road to recovery.
I always believe in hope even when it is difficult.

I hope.