One week later

Radiation treatment has been over for one week and Rich expected to bounce back to normal within days.

He was told that he had more recovery time and that the radiation was to drag him down with fatigue for at least 4 to 6 more weeks and some people...well, it took longer.

Rich is not patient in this area.
He decided to mow the yard.  This involved cleaning the mower deck, cleaning up the blades, and other things in preparation.

By noon he was exhausted.  I suggested a nap.  

He did get up and get the yard mowed around the house before he parked the mower.  I could tell by the way he walked that he was done in.
He'd been cautioned not to overdo it.  But he is also the type of person who will push it to the limit and then pay for it later.

This week has seen up and down days with energy and throat pain.
However he is eating better and doesn't seem to be having the issues he was having last week with water going down the wrong way.

He coughs up nasty mucositis which is a side effect of radiation. He says that his throat hurts worse in some ways than it did when he was in treatment.

Patience little one...I want to say.  Patience.

I must admit, if I were in his place, I'd be pushing too.

His neck is starting to heal up where the skin had broken down and was opening up.  I think he'll probably scar in one area, but we've decided to call it a "Badge" for what he has been through.

A very kind friend of ours delivered hay today and so we are freshly supplied in that area.
Rich hasn't felt well enough to help with the chores.
I think balance is still an issue when he is tired.

Tomorrow we have an appointment with Speech.  I'm not sure but this may be the appointment where they check his swallowing abilities and how damaged his epiglottis is.

Then we meet with Dr. Rahim the chemo oncologist.  

We enter the after treatment phase now.  The follow up appointments and tests.

No PET scan for at least three months to see if they 'got it all'.  I probably worry about that aspect a bit more than I should.

So to sum it up.  7 days after the end of radiation, things are slightly better in some areas and improvement is slow.

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.

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.

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.

We've Got Your Back!

We walked into the waiting room for Radiology.  Our trip to MAD City was quiet.  Rich slept, he was miserable but quiet.
After his treatment, we saw Dr. W, who felt the lymph node and commented that it was already receding.  This was great news!  I felt ecstatic.  My husband-patient however was miserable still.

Dr. W mentioned that by next week Rich's mouth was going to start feeling the effects of the Radiation Treatments.

We made it to the VA with time to spare.

Rich's labs were good, his white count was fine...
Then we entered the Infusion Lab and when Ronnie the nurse asked Rich if he wanted water and went to get it, I followed her.

I told her what had been going on.  I told her about 'nausea-not nausea argument' that we'd been having. 

The way he got impatient with the Jevity and pushed it into his stomach and then the horrid diarrhea that he was experiencing.
I also mentioned that I thought he was hitting a major block of depression.  "Well who wouldn't be, right?" I asked.
Ronnie told me that she'd address everything with him.

First thing she did was weigh him and then question him about what was going on.  She was like a drill sergeant with her questions.  

Finally she leaned back and said to him, "If you continue like this I will admit you to the hospital.  I can do it today, if you like."

Rich shook his head.

Then Ronnie carefully explained that the anti nausea meds that are given intravenously with the chemo treatment last for 72 hours and everything he was telling her was right on for the nausea catching up to him and his refusal of taking his nausea meds only made things horribly worse.

She told him in no uncertain terms that he needed to have one can of Jevity EVERY night this week.  Starting next week, two cans.
Any meals missed = one can of Jevity.
She arranged for us to receive 'Kangaroo' bags to put the Jevity in and hang from an IV pole.
Ronnie then explained that Jevity needed to drip in slowly to his stomach because if it was 'pushed' in, it would cause severe diarrhea.
Bingo.
Rich's impatience had contributed to his awful bout with that...

Ronnie suggested setting up the pole and bag, kicking back on the couch and watching a movie while his liquid 'gold' dripped into his stomach.

Ronnie went on to say that he needed to get out every day and take a small walk of some kind.  He needed to have fresh air and see the clouds and sun.

One word about Ronnie.  She is kind, sweet, and overflowing with compassion regarding her patients, she cares for them and it shows in her eyes.  She knows how to be a hardass when it is warranted.  And she knows how to deal with Veterans. 
She is priceless.

She told him that IF at any time he couldn't eat, or he couldn't control his nausea, that HE should call the Oncology number we had 24 hrs a day and a nurse would get back to him.
Not only that, we were next door at the UW Carbone Cancer Center 5 times a week...so...
IF he felt ill any day, come immediately to the Infusion Clinic and they'd make room for him.

What we had been going through could have been avoided.

Boy, did I feel like a dumb-ass.  I told Ronnie that.  She shrugged and told me that I was normal.  This cancer treatment thing had a learning curve.

Rich had been dehydrated and sorely needed the IV hydration that he was given first.  He really perked up with that and ate pudding and drank juices and ice water.

Ronnie was busy making phone calls around the VA and even got us in to see a Mental Health Counselor before we went home.

We made the trip home after an 8 hour day spent at two hospitals and clinics.  

One of the things I won't go into here is all of the different medications Rich is getting.  Each person is so different in what kind of cancer they may have and what will be given to them.
As we were told by the Nutritionist yesterday, there is such a delicate balance of trying to make the patient as comfortable as possible during treatment.  Medications would be changed and adjusted according to how the patient was doing.

It may also be important to bring along a voice recorder so both the cancer patient and the CareGiver can review what was said.  I have found that to be priceless.  I haven't run across a nurse or doctor yet who wouldn't let me use it.

We spent an hour with a counselor who helped address the Depression issues.  

Day 6 of radiation completed.  Day 2 of Chemo completed.
8 days into treatment.

Most of all, don't lose hope and know that if you are getting treatment, there are people who will have your back.  I imagine this is true for nearly any oncology clinic.
I think this was the most important thing I learned yesterday and it was such a relief.

First Day of Chemo and Rad

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

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

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

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

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

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

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

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

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

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

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

Life is good ... considering.

Helicopters and Chemo

Yesterday we drove to Madison for some appointments.

We got there and made it to the first one.
When we checked in for the second one with the Chemo doctors, Rich was asked if he had his labs.

No.
It wasn't on our sheet nor was it scheduled.  Well things went a bit wacky after that.

When we got in the room with Dr. R. we were told that they may be starting chemo today...
or
tomorrow.

But from now on, after this first treatment Chemotherapy would be on Tuesdays,...
but...
they were still awaiting to hear from the Radiation folks.

Two different hospitals are involved in this treatment.  Communication between the two seems to be a bit...well...
difficult...even though they are connected to each other by walk ways, they are two different entities.
Even though UW doctors rotate through the VA Hospital and clinics, they still are two separate entities.

There is quite a bit of 'red' tape to cut through when dealing with the VA and non VA hospitals.

Eventually our Care Coordinator Gabe got down to brass tacks.  He took us to the Chemo Clinic or Infusion Clinic to meet the nurses.
While Nurse Ronnie explained what to expect Gabe worked on getting a time for Radiation Therapy from the University Hospital.

During the time that we were sitting there, a Flight for Life helicopter hovered nearby to land at the UW.  
When Rich is emotional this is a trigger for his PTSD.  

Suddenly he went quiet, whispered "Chopper," and stared down at his hands which shook.
Ronnie and I looked at each other.  I saw on her face that she understood what was happening.

In a few moments it was over and we got back to our discussion.  The infusion clinic is nice and spacious.  There is a snack bar, and each infusion room has comfortable chairs for family to be with the patient.  And there is Wifi!

Finally we were ushered out of the clinic with appointment times.  11am, Dental, 12pm Chemo, 3pm Radiation.

Then his daughter will be taking him home to her house where he will stay tonight and then tomorrow I meet him at the Radiation Clinic.

We are beginning to start a routine.  Each week before chemo we have to do labs.  5 days a week will be radiation.
I am reaching out to a couple of neighbors to cook some meals for us.  I'm finding that long days are not good for making decent meals.

I've looked at the 5 day week with fresh eyes.  We'll see if working Saturday and Sunday are going to work.  I feel it won't work out really well if I am not able to keep up on house chores, groceries, and those small mundane things we all take for granted.

Something has to give.

Now just to figure out the schedule for feeding animals...