What Is Anticipatory Grief?

 Anticipatory Grief is something that can begin before the person you know has died. 

I realize now that the last nine years of my life I've assumed the role of a Caregiver. The first diagnosis of Stage IV throat cancer changed our lives. [Whoever has had cancer in a loved one or family member will know that the C word changes things forever] 

The event started a cascade of other health events that compounded on Rich's COPD. 

Now we live day to day with a routine of me doing the simple things for my husband that he cannot do. My routine has changed and his care is at the forefront of each of my days. 

At first I was frustrated and a bit angry because I never thought that I'd have to learn to do all the 'man' stuff that was always done by him. Over the years, I've taken on all of the duties around our small farm and it can be very taxing. 

Finally I've come to the realization nine years later, that I've gone nowhere and done nothing but give give and give more. Yes, it is common to feel that way as a Giver. It is also common for a Giver to feel guilty at those very same thoughts.

There are days I look outside and see myself on a camping trip I've longed for, or perhaps a Waterfalling trip...exploring the parks that my state has to offer. Wandering along wooded paths and exploring without a time clock. Reality bites and I am doing my next Giver thing. 

I'm luckier than some Givers. I can still get out for daily walks and sometimes fit in a nice hike at a park close by. 

But I daily grieve for the person I used to be married to. The energetic and sometimes pain in the butt guy. We did a lot of weekend traveling together to see other friends. We camped with our mules and rode parks. 

He fixed tires, maintained the mowers, tractors, skid steer, and did all the farm jobs. He was a force to be reckoned with.

Givers learn things. I learned to drive the skid steer, arrange for maintenance on them, fix fences and reroute them when the deer take them down or trees fall on them. I used to really go after it with gusto. But I'm growing tired of all of my extra duties.

The point is. Daily some small part of me grieves for the person I used to be married to. The one that gave out hugs all of the time. The one who was independent and vibrant. Not the person who sits quietly and stares out the window. I ask him, "What are you thinking?"  He blinks and finally looks at me and replies, "Don't know. Nothing."

I like to have a plan. I'm always thinking about the 'what if' scenario. Apparently, that is not the healthiest thing to do. However, that is the way my brain functions. 

IF this happens, what is my next step? 

Each day, I see a little less of the person I married. He moves slowly away as if he is fading. He is fading. 

Each day I grieve a bit more for the person I am losing. I know I am putting forth my best efforts but I can't change what is happening inside his body and brain. Some days I am angry that this happened and think IT is NOT fair! And then there is the guilt for thinking that terrible thought.

There is no cure for his diseases but a release of pain and suffering when the time does come.

And then I will grieve again. Not just for him, but for me who after years is suddenly out of a job. 

What will I do?

Will I feel whole or half?

Another 13th Visit

Just when you thought it was safe to go back into the waters...

Rich went to his Dental appointment as was scheduled.  During our short two visits to Palliative Care, Rich had complained about 'floaters' in his eyes.

Dr. Loconte didn't give it a thought, they seemed more concerned about his overall well being.  Let's just say that Palliative Care is a good thing, but it didn't work out for Rich very well.

After his Dental appoinment, Rich walked over to see the Eye Clinic. He thought he'd see if he could get an appointment to see an eye doctor about the floaters.  They seemed to really bother him quite a bit.

As luck would have it, an appointment opened up and 'could he please wait for the doctor?'  Rich agreed, it was rare that you ever got in on a same day at any clinic at the VA.

The UW eye doctor showed up and listened to Rich's complaints.  Rich's eyes were dilated and examined.  He told Rich about the floaters.  If they got worse or he saw flashes of light, he was to 'get in' immediately. 

Then he asked Rich if he'd had any family history of skin cancer.

I think that took Rich by total surprise.
"Nope."

The doctor said that he was scheduling Rich for a biopsy in a few weeks as he had skin cancer under his eyes. These areas would be removed as cancer near the eyes was not a good thing and they didn't want it to spread to his sinuses nor his eyes.  He told Rich what kind of cancer it was called and that ... he the doctor was 99% certain that these spots were cancer.
And by the way his drooping eyelids would require surgery as they were blocking at least 30% of his vision.

When Rich got home, he walked in the door and said "I saw an eye doctor today, they are going to do surgery on the lids so I can see better and did you know I have cancer under my eyes?"  He paused and thought a moment.
"I think he called it 'Eye Cancer Lymphodemia'."

I shook my head and said, "I doubt that is what it was called!"

Then I did some research and found the spots that Rich was talking about.  Indeed when I compared them to Basil Cell Carcinoma 'on the face and below the eye' I was surprised.
Indeed I could see it plainly.

And we wouldn't have had a clue except for a cancellation on the 13th.

Now we have another wait and see.  Another cancer diagnosis that happened on the 13th of all dates.

However this cancer...if it is Basil Cell Carcinoma and it has not spread deeply into the tissues, has a 99% survival rate of 5 years or better.

And so it goes.

Cancer friendships

I don't know how to explain it, but by the powers that be, we met another couple who has been touched and devastated by cancer.

I met her on a social media site and after much back and forth messaging, we set up a tentative meet. We had decided that we were not axe murderers nor were we some sort of weird internet psychos.  Well we felt we weren't.

We set up a meeting in a public place and had a picnic.
Her husband N, had had stomach cancer the year before and had just finished treatment in January 2015.  It was now October.

Rich and I were getting ready for the 3 month follow up and PET scan. The guys talked about old cars and dogs.

Their lab Jeg was a great ice breaker.  Dogs always are and who can resist such a handsome face as this.

We spent a couple of hours yacking and promised to get together again.
S, N's wife and I keep in touch nearly daily.  We have each other's home phone numbers, work numbers, and cell numbers with the understanding that we can call on each other at any time of day or night.

People and caregivers who have gone through cancer don't have to pussy foot about what to say to each other.
We talk about the treatments, the chemo brain, the horrors of what they go through and... what the care giver goes through.
How we stumble from one step to another our lives tangled up in doctors, labs, radiology, blood tests, and weight loss or gain.

There is no stumbling around for the 'right' thing to say to each other.  A common bond is created.

At the end of our first meet the guys shook hands and gave each other half hugs.

S and I held on to each other like lost lovers, I think we were happy to each find each other in the living flesh.

We've tried to schedule a get together for dinner or something every few weeks.
N has been feeling unwell and today I received the text.

Tonight we'll go see him in the hospital.  We are all entering new territory here.
There are a lot of what ifs...or what now?

Our friendship has grown quite close and quite fast.

Between cancer friends, there is only this.  Enjoy each moment with each other and don't look to hard at the future.
Treat each parting as a goodbye.

Hold on tight.  Cancer is a wild ride.

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.

4 Month Visit with Hematology Oncology

We went to see Dr. Faris first who has been a big help through out the treatment process.  He is a psychologist.

Rich was pretty insistent on getting signed up for Tai Chi, as he feels this form of exercise can help with his balance and his psychical well being.  It builds strength and balance and so much more.

With that done we saw Dr. Rahim.  He went through Rich's chart and we talked a bit about how things were looking good and Rich was now in the monitoring stage.  There would be a follow up with ENT -- Ear Nose Throat, and we'd see him again in 3 months.

We told him that we were going to meet with a Dr. Loconte who is in charge of Palliative Care and Dr. Rahim nodded, he believed this was an excellent choice for us.  Dr. Faris planned on sitting in with us on the first time we see Dr. Loconte and Dr. Rahim said he would be dropping in also.

What exactly is Palliative Care?  Well it is not end of life care, that is called Hospice.

What Is Palliative Care?

Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.

Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

We thought about this decision and felt that is was a good fit for Rich.  Dr. Faris had brought it up a while ago and we've talked with other health professionals [nurses in particular] about it and they said it was a great program.

As Rich told Dr. Faris yesterday, "Look, we are all going to die.  I just don't want all the decisions taken out of my hands and feel lost like I was during cancer treatment."
Dr. Faris understood.

With Dr. Rahim, Rich said, "If that cancer comes back, I am not going through treatment again."
Dr. Rahim shrugged and put a hand on Rich's shoulder and nodded.

"Mr. Ewing, let's cross that bridge if it ever comes to that? Okay? I will be checking in with you with your visit with Dr. Loconte."

So onward our care goes.

CT Scan

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

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

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

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

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

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

Now we look forward and not backward.
Onward.

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.  

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.

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.

Anaphylaxis Reaction to Chemo

From my journal May 20th.

Nurse Jackie recieved the new Chemo 'cocktail' to give to Rich and began to prepare to give it to him.

She explained that he would need to tell her right away if he felt funny in any way shape or form.

He agreed.  Rich was in a great mood, he'd eaten a good breakfast and a good lunch.  

In our meeting with Dr. R the day before the Oncologist Team had suggested a change in Chemo drugs because of the hearing loss experienced with Cisplatin.

The new 'cocktail' was called Erbitux.  All chemo has side effects and we read about them and discussed them at length with Dr. R and signed the paperwork to go ahead with the treatment.

Jackie laughed and Rich made jokes about having to be stuck in the chair for hours on end.  
I was busy creating a fractal called 'Cure Cancer' with my Mandelbulb 3D program on my laptop.

The Infusion clinic was busy with nurses attending other patients.  I started working on the color scheme when Jackie asked Rich again if he felt funny.

I looked over.  Rich nodded, his eyes had narrowed and looked far off. Jackie asked if he could hear her.  He nodded.  
Was he experiencing tunnel vision?
He nodded.
Could he answer her?
His head dropped to his chest.

Mr. Ewing, Richard, Richard!  Jackie's voice became concerned.

Jackie must have sent out some sort of alert or maybe even shouted for help, because in the next instant he was surrounded by nurses.  Blood pressure numbers were being read off, O2 levels.

I slammed my lid on the laptop and grabbed my stuff.  I backed out of the way and into a corner.  
Over the PA system came a call for the 'Crash Team' or whatever it was called.  The announcement was for our little room.  
I turned and watched as more people rushed in, a doctor ran in from a clinic across the hall.

Several people with giant orange bags entered and I shrunk back to stay out of the way.
I saw Rich's chest heaving, I could see he was grey and sweating.  His legs began to jerk and twitch. 
They were trying to get a response and none was coming.

I looked up.  The VA police had arrived and I was curious at first, then saw that they were making sure that the doorways were open so that the medical teams could come and go without using them.  And they were keeping anyone curious at bay.

Nurse Ronnie came up to me and asked me if I was okay.  I simply replied, "Yes."  She squeezed my arm.
She started to say something and I stared over at the mass of medical people and quietly said, "Anaphylactic shock?"

She hugged me, I hugged her back but watched.

On TV, everything happens so that you the viewer can understand what is going on.  Conversations are clear and concise.  Not so here.  I caught parts of sentences being uttered and someone repeating them.  Another voice. And another all jumbled together.

For a moment the staff backed off and I stepped forward to touch Rich. 

I glanced down at his arm where the chemo concoction had gone in.  It was bright red with huge welts on it.  
Hives.
I'd never seen hives like that before.

I backed away.
The Team stabilized him and then we moved to the ED where they put him on a bed.

Dr. R appeared and I walked with him back to the Infusion clinic to pick up the rest of my things.  Both he and Jackie looked a bit distraught.  I touched Dr. R's arm and told him it would be okay.
According to the literature there is a less than .001% chance of a severe reaction like this to the drug.

He couldn't have known.  Funny thought, me trying to comfort a doctor?

Ronnie and Jackie asked me again if I was okay.

Was I okay?  I didn't know.  I had gone into my mode of emotional distancing or was it withdrawal?  I would have done no good by breaking down and causing a scene.

End result.  Rich is home today [Thursday], he feels fine.  He doesn't recall most of the incident and he did very well today.  He even ate like a champ.  We made our radiation appointment and headed home.

As soon as we dropped our stuff off in the house, we both headed upstairs to take nice long restful naps.

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.

Understanding Respite Care

Respite care is something I heard talked about before we started Rich's treatments.

But of course ... I am tough as nails and can deal with anything, right?

Actually that isn't quite correct.  

Rich's daughter offered to come up this week and give me a break.  I was pretty sure I didn't need it.

She arrived and ...

... suddenly I wasn't rushing to 'get this done' or 'that done' at break neck speeds.  I wasn't trying to plan out my every move to make everything super efficient.

And yesterday I stood alone in the house and felt perplexed.  I wasn't on a time schedule for the first time in a month.

I was free to do what I wanted.

I didn't have to go to work, I didn't have to drive to the hospitals, and I didn't have to do anything.  If I wanted to, I could read a book or watch birds.

It felt odd.

I felt as if in limbo.

So then I decided to do the next sensible thing.  Farm work.  I occupied my time by 'making' fence'.  Certain areas of the property are usually mowed by now, but haven't been.  So I made electric paddocks for 3 of the mules, they can rotate from one near the house, one near the area where we store round bales, and another area alongside the driveway.

I was able to talk to Rich last night in a video chat, a new experience for all of us as our grand daughter and I set it up.  It was fun.

Rich's reports from the doctors is uplifting.  Only 3 more chemo treatments are left!

He gained 3 lbs this week.  So we are so far beating the 'feeding' issues that come along with throat cancer treatments.

The extreme fatigue is expected when bombarded with chemo and radiation at the same time.

His time at his daughter's house has been helpful.  He is interacting with the kids and visiting with his daughter when he is awake.

This was a concern last week when it seemed he wanted no social interaction with anyone.

So here we are.  Another week done.

Who's counting?

Oh we are for sure.

Rich comes back today while I am at the Range getting my Qualifications done for my Armed position.

I miss him.

But I surely did need the Respite Time.

Respite:

noun

1.

a delay or cessation for a time, especially of anything distressing or trying; an interval of relief:

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.

13 days

Well, here it is, 13 days of going straight at it.

I think this is where I can look back and say I've got a bit of Care Giver Burnout.

It isn't pretty.
A Care Giver who doesn't take a break can be cranky, tired, overwhelmed, and sometimes even not so pleasant.

I'm trying to be pleasant, but I hear myself as a Nag.

"Did you take your medicines?"
"What did you eat?"
"How is your stomach?"

You get the idea.

I reminded him this morning that we had only 45 minutes before we had to leave. 
It was a nag, it was a push, it was...well, it was the truth.

I hate my job today.  I would just love to let him rest and do exactly what he wanted.
But course of treatment dictates otherwise.

He is tired, he is not feeling good, he is losing weight.  Getting the stomach on a happy medium is nearly impossible.
We swing from one extreme to the other.  
He resists the thought of taking Jevity which will keep him alive.  I do not remind him that if he continues to not take it and loses more weight that Nurse Ronnie will just have him admitted to the hospital.


Making up food that he can eat consumes most of my free time.  
I've joined a site called CancerCompass that has great information on all types of cancer.

There are tips on how to get through, what might be helpful to eat, what people's experiences were and lots of support.

There is even a section for Care Givers.

I wonder if a care giver experiences frustration also when a patient who feels miserable is not very cooperative.
13 days since we started.

We still have until mid June just for the daily treatments.  And then follow ups after that and dealing with the longer lasting Radiation side effects.

Onward.

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.