Offering some hope

We met with Rich's PCP...Primary Care Provider this week.

She is one very straight forward person and she also tells you like it is.

"How are you today Mr. Ewing?"

Rich shrugs. "I'm dying bit by bit."

She answers, "We all are, but I understand how you are feeling. Your meeting with Neuro-psychology flagged you for severe depression. We need to turn that around as quickly as possible."

Rich stares at the floor and then something far away. "Nothing can make me feel better, I just want to feel better once, you know?"

She nods. "Of course you do! I've put in a call to your psychiatrist and he needs to review you AND see you ASAP."

I interject. "I wonder if his meds don't work any longer. Rich has a history of his medications for depression working well for about 6 to 8 years...and then..."

She nods and types swiftly, "You are absolutely right. We may end up with a different regime of meds. And speaking of that we are going to stop the Tamulosin right away. I think you have had nothing but poor reactions to it..."

I pipe up. "I know Rich doesn't want this, but can we look at oxygen therapy? Lately he can't function very long without going back to lay down with his CPAP and 02. He feels extremely fatigued and 'out of it'."

She nods sand turns to Rich. "We will test you, and your heart, your lungs are not elastic so you may need oxygen to keep from damaging your heart, lungs, and brain further. Are you open to that?"

Rich makes a face.

Doctor pats him on the back and says, "Struggling to think, to walk, to breath, is no fun. This will help."

I point out that since he spends up to all but 4 to 5 hours a day with his CPAP and 02, that he is already ON oxygen. She agrees and I see Rich make that connection.

He asks about the aneurysm. She looks at it and says, "If they want to do it, go for it. IF you go in alive you come out just fine." She is not being cavalier, just straight forward.

She types some more.
"I'm ordering a stress test for your heart. I'm putting in for an immediate re-eval of your psych meds."

Then she turns to him. "You know, you are dying, we all are, but I think we can make some adjustments so you don't feel so depressed, so tired, and so frustrated.
I'm going to put you on Aricept for your dementia. I see you will be visiting speech therapy, OT, and cognitive therapy."

She raises her hand and draws a line. "I want to hold you here for along time. Mr. Ewing, you will live and you will feel better. You have a good partner and wife, she is looking out for you."

We leave and I think we both feel a bit of hope.

Is it real hope? I believe so. Because not believing it is not going to help us.
Hope always helps.

They will get along

Today we met with a Social Worker, a Resident Doctor Pete, and, Dr. LaConte.
I had a bit of a laugh when the Social Worker handed me her business card.  Sarah Rogers.
Let's just say it is a family name and Rogers was my maiden name.

Dr. Faris, true to his word was there.  He took a stool and sat quietly in the corner as Sarah and the Doctor Peter talked with Rich.

It was somewhat like an interview to see what issues regarding his health he would like addressed.

Sarah was direct and asked fantastic questions of Rich about regarding faith, spirituality, and medical concerns.
She was able to get Rich to give her a lot of information.

I'm not going to repeat our 2 hours with the doctors, but I will say I used a digital recorder so I can review the meeting. 

Struggling with lingering side effects of the radiation and chemo were his main complaints.  'Finding the new normal' was a key phrase.  Rich wanted to find the old normal.  His wish is to get back to what he used to be.

I'm not sure that is ever going to occur.  But that is my unspoken opinion and I will support Rich's desire to get back to the old normal.

Another main complaint is his balance.  We spoke at length about that today.
I think I haven't realized how much the loss his ease of footing has effected his mental well being.


I know Dr. Faris expressed how interesting it was to sit back and observe and not have to be involved in the conversation.


After nearly two hours of talking we are going to work on the balance issue first as that seems to be a key to making Rich feel more comfortable.

Dr. LaConte thought that Physical Therapy may help. 

Ear/Nose/Throat will be looking to see if there was any inner ear damage from radiation therapy 'scattering', as well as a follow up to check where the tumor had been on his tonsil.

There was so much covered by everyone it will take me listening to the meeting at least one more time to make some more sense out of it.

On our way home Rich talked about how much he like Dr. LaConte and how he felt really comfortable with him.

"I think we will get along just fine."  Rich said.

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.  

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.

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.

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.

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.

Half way through Chemo!

13 Radiation Treatments in, 20 left to go.
3 Chemo Infusions done, 3 left.

We are entering the 4th week of treatments.  Rich was told by Dr. W of the UW that he would have a very difficult time swallowing by this time.

Indeed Rich does have a horrid time taking his medications.  His mouth feels awfully dry all of the time and foods have begun to lose their normal taste.

This mostly from the throat radiation.
Yet Rich insists on continuing to eat small portions of food. Mini meals.  He can't drink anything carbonated at this time as it burns his gums and throat to the point of tears.

Milkshakes and smoothies however go down nicely.  The cool drink and the 'smoothness' of it slides right on down.  We have fortified the drinks with protein powder and I am looking for some protein drinks to have along for anytime 'snacks'.

He ate a vegetable soup with hamburger in it the other night ... two small bowls and was delighted to eat it. Other meals include scrambled eggs with small chopped up bacon sprinkled with cheese.
He can still eat lightly toasted English muffins with a huge slather of homemade jelly on it.  
My efforts at homemade jelly are really being appreciated at the moment.

How is his energy level?  Awful.  Dr. W. told him to rest and sleep ALL weekend because he'd be back at it come Monday.

He is exhausted, which we were told is normal for someone to have both radiation and chemotherapy at the same time.  The effects of radiation will last up to ... or beyond 4 weeks after treatment stops.

Rich wasn't pleased with that information, but since his tumor on his lymph node can't be felt any more...and the one on his tonsil is 'pea' sized.  
This godawful treatment is working. 

His daughter and I keep concocting meals that are high in protein and carbs along with drinks that replenish what chemo takes out of him.

We are learning as we go and it isn't easy.  
But we sure have the determination.
Which could only be possible with support from friends and family.