Advice on what now...

 Actually, I don't have any advice. Period. 

Everyone says: It will get better. It will.

Alert.

It hasn't. IF it wasn't this time of year, perhaps I could distract myself in the long dark cold evenings or I could distract myself during the long ... cold...dark mornings. 

My saving grace is forcing myself to go do things when it would be so much easier just to wrap up in a blanket with Charlie at home and watch the wall do nothing. 

This is called depression and it is classic. However, it did not hit me hard until 3 months later. I have a feeling that I am not the only one to go through this, but at night with just the soft light coming from the Christmas Chair, it feels as though I AM the only person in the world experiencing this.

In fact at 3am, 4am, 5am...I know I am the only person in the world experiencing such harsh, painful, and gut wrenching grief. No one else in the world knows what it is like.

Charlie sits up and stares at me. He can only sigh and move closer. My stomach aches, my eyes burn, my throat tightens. Then nothing. I am numb. I am tired. I am angry, sad, frustrated all at the same time. How on earth can that even be?

Yesterday was so happy, so fun, and so energizing. The dark morning is so wretched. I get up, light the scented candles, and made some decafe. 

I stop at the sink and look at the dishes I didn't wash last night. My first thought is to throw the dishes in the trash. I know I'd regret it so I stack them into a sink tub to do later. Maybe the dish fairy will show up and clean them. I don't even want to look at them. For some reason I hate them. 

The 4 dishes and 2 cups show me that only one person lives here. 

Stupid.

I want to kick something, but don't.  I feed Charlie and he gobbles up his breakfast and stares at me until I realize that his grunts are for his morning chew treat that is supposed to clean his teeth.

Good Dog. He makes me move from where I was glued to.

~~~~~~~~~~~~~~~~~~~~~~~~

I finally decided that I was going to force myself to go to the gym and work out with my gym pals, my support group. We gals wore our Friday shirts that says CrossFit Legends-I'll be there for you T-shirts.

We'd done a hard cardio workout and then Deadlifts which are everyone's favorites. I did a life time achievement lift. I weigh 118 lbs and lifted 160.  The coach was exuberant as were the others. Oddly enough, I wasn't, I just shrugged.

Then I helped Charlene who was having trouble with stretching out afterward. Julie came up and hugged me telling me that her new cancer treatment was hopeful. Pat came up to me in the parking lot with a meal of Chicken Gumbo and Rice that she'd made and handed it to me. She thought a homemade meal would be good for me.

When I got in the car to drive home, I didn't want to kick the dog or scream at the world. Even though there was freezing drizzle, I felt oddly comfortable and pleasant.

Then came the phone call from Olive. She apologized and said she had a BIG ask. What was I doing for Christmas Week?

I immediately told her I was available for whatever she needed. Nate was going to have his second round of 5 days of chemo from the 22nd to the 26th. I said I'd clear my schedule and there it was. I could watch her 2 and 4 yr old boys for the week while they did the infusions.

She apologized for the Big Ask during Christmas and I said I that I could think of no better way to spend the Holidays but with children. 

So, my what now advice? I don't have any. But when others reach out, it makes life a bit better.

No one really knows how much they helped me on Friday. But I do.

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.

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.

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.

Chemo and Radiation Break

The weekend is time for the body to rest from Chemo and Radiation Therapy.

Tuesday will be the third Chemo treatment of Cisplatin. 
I was reading the side effects from this drug and really it isn't pretty considering the drug is very toxic.

One of the glaring points made for combating side effects was drinking 2 to 3 quarts of water daily.  

Fluids!  I wonder how I can convince 'my patient' to consume this amount daily.
I had to work last night until midnight.  
I hate to say that it was a small relief to be with other people and to be away from the farm for 8 hrs.

Rich called me last night to tell me that he'd eaten 3 more times in very small meals.  But he was too tired to take a can of Jevity.  He said he'd eaten enough during the day.
I can see that it will be a continuing battle for him to get proper nutrition on a daily basis.

The hardest side effect for Rich to deal with from Cisplatin is fatigue.  It is all encompassing for him.  

This raises an interesting issue to think about.
He sleeps all of the time and gets up periodically.  I understand the need to rest especially with the wicked schedule we have with driving nearly two hours just for treatments.

But as he loses weight, which he is doing, and doesn't move around, he will lose muscle tone and become much weaker than he is.


I am at a complete loss as to how to 'fix' that.  
Being a Care Giver is much harder than I thought it ever could be.

This morning a neighbor will be over to put round bales into two of our winter pastures.  It will cut down on my chores for at least a few days.

We've had a break from Radiation that feels too short to me.
The Radiation to the throat is starting to show up with its effects.  His salivary glands are not producing as much saliva.  Items like his beloved daily bagel are no longer possible.
So we have moved towards English Bagels with butter and lots of homemade jelly, along with scrambled eggs in the morning.
Today's menu while I am at work will be:
Mashed potatoes and gravy for snacks.
Yogurt fruit smoothies for any time.
Cottage Cheese, Strawberries, Juice, Eggs, Soup....
Jevity...Jevity...please please take your Jevity!

My biggest issue is getting the time between farm work and our rigorous schedule to make healthy food for him to eat.

Tomorrow the week begins again.

I will be trying to make arrangements to stay overnight in Madison at least one night a week very soon.
Once our animals are moved to summer pasture ... soon...I hope, things won't be so hectic around here.

And I am not ashamed to admit it.  10 days into treatment and I am tired.  We have 5 weeks left.


~~~~~
Addition:
Rich is doing better today, he went outside this morning when a neighbor came over to help me!
He ate two helpings of breakfast, eggs and English Muffins.
Keep your thumbs and fingers crossed today.

Saturday ~ Can I trust him?

I've set him up with nutritional snacks because I have to go to work this afternoon.

The yogurt smoothie he had last night really helped with the diarrhea and he hasn't mentioned nausea all day.

I let him sleep in until 9 am.  I however did get him up and 'made' him take fluids and Pedialyte.

At 10, we ate scrambled eggs and English Muffins slathered with homemade grape jelly.  He said it was very good.

We shared a cup of coffee together and then he went back to sleep.

I told him at noon I would get him up for a small meal, he should have some of the peach yogurt stuff I'd made.  

Yep, he agreed that it would be a good idea.

I came in just after noon and he was up.  Good thing, I thought.  I grabbed the smoothie and started to fix it for him.
He grumbled at me and waved me away.

"I have a fever, I'm cold." He grumbled.
I whipped out the thermometer and took his temp and showed it to him.
Normal.

"Fine," he said as if I'd just insulted him, "I'm still cold."

I got him a flannel and shut the windows telling him that yes, it was a bit chilly and I'd turn the heat on for him.

He got up and looked out the window at the cattle.  

I asked, "Do you want to walk out and see them?  The calves are separate from the moms.  The apple trees are pretty and everything smells nice."

"No, I don't want to walk a f*cking mile, no I don't want your peach stuff."  He turned and walked to the pantry and rummaged until he found a Hostess cupcake.  He ate two while glaring at me.

I held up the lunch we planned together only two hours before.
He shook his head.  

"I'm sorry," he said, "You don't know what it is like. I don't mean to be...like..." he waves his hand in the air.

I replied,"No I don't know really. I'm not walking in our shoes."

"I'm just so tired.  I can't do what you want me to do.  I just can't."

I watched my husband go up the stairs and then went and tucked him in.

"Will you promise me to do one can of Jevity tonight through the feeding tube?"

He shrugs, then mumbles, "Yes."

And I wonder.  I'll be at work.  I'll have to chore at 1 am. I look out the kitchen window.  Perhaps the cattle do look as though they are a mile away to someone with no energy.

So I pack my dinner to take to work.  I feel guilty, like I need to be at home to nag him into drinking fluids and eating nutrition.  He wants to get better he says. 

I want him to get better. 

Maybe he will have the Jevity.  He is supposed to every day.  He refused it last night claiming he'd eaten well.

I guess I'll know when I get home tonight.

Come Tuesday, our next day of Chemo Infusion will be a telling one.

I wish Nurse Ronnie were here, she wouldn't put up with anything from him.

He is angry.
He is sad.
He is frustrated.
He feels sick.
He sees no end.

I want the strength to get him through this.

I want to trust that he will follow through and use the PEG tube we call Miss Peggy.

I want him to remember that at the end of this, the tumor will be gone, it has already shrunk.
But perhaps you can't see that when you are miserable.

Just once I'd like him to try and fight back at this awful thing called cancer.
Get angry and decide to try everything to make yourself better.

I have no choice, I have to trust him to do the right thing.

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.

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.

And the Doctor said Cancer

No one forgets the day they have been diagnosed with Cancer.  Cancer with a capital letter as if it is so important.
Yet it is.

It changes many things that simple ugly word.

March 13th, 2015.  Friday the 13th my husband went to the VA hospital in Madison to an ENT check up for a lump on his throat and some sinus issues.

They did a CT scan.  The ENT people then did a biopsy.  They told him it was cancer but didn't know more than that.  The biopsy had to go to Pathology.

He pulled in the driveway.  I'd stayed at home to do chores after all this whole appointment was pretty routine right?

He parked the car.
He walked slowly towards me.
He shook his head slowly.  "Cancer.  They said I have cancer."

The sun was warm, it was pleasant.  I could hear the birds singing.  

No, the birds should be falling out of the sky and the clouds should rush in with a huge thunderclap and lightening.

But it didn't.  I felt shock go through my body.  And I had no words to say of comfort to my husband.  I couldn't think of a thing.  So I took his hand.

It was the 'C' word.  That awful dreadful C word.  The word that nightmares and horror stories were made of.  Those stories that showed children with no hair, people with hollow eyes, thin, sick, ...but people out there and not the person in front of me.

When the diagnosis comes like that, imagination flies and goes wild.  

And it doesn't get better because suddenly we were immersed in trying to figure out what this Cancer was.  Of course no one knew.  One of the ENT doctors assured him that he'd call as soon as they got the Pathology Report back.

So began days of waiting that felt like weeks.  A Cancer with no name.  We felt as though we were in emotional limbo and we went through our daily lives like living Zombies.  I wasn't sure what to say to comfort my husband and he wasn't sure he wanted comforting.

And so the Journey began.