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.

I'm Counting the Days Now...

Maybe I shouldn't count days, maybe I shouldn't look forward to when I can have a day for myself.

Yesterday was another extremely long day.
It started well.  While I was doing chores, Rich started to feel nauseated and instead of taking his meds he waited until I came in.

Another side effect from Chemo hit him at the same time. Ewww...Diarrhea.
Not a pleasant subject but if we are talking about Cancer and everything associated with it, ... there it is.

I called the Infusion Hot Line and was told to give him his nausea meds and Imodium for the diarrhea.
I'd done the nausea meds and had argued with Mr. Patient about taking them.  After talking to the nurse it got...

Done.

We were nearly late for our appointment and but the bouts of diarrhea held off for 4 hrs.  He should have had another tablet after we got to the UW. Bad me, for not being able to keep everything straight and do all the driving and navigating from one place to another.

Mr. Patient and I got directed from the Infusion clinic to the ER at the VA.  Fluids and anti nausea IV meds were given and there was a kind 'lecture' about keeping up on fluids AND the feeding.

Blood counts dropped from yesterday so it will be interesting to see how it is come Tuesday.
Our day spent at the UW, the VA ER, and travelling was from 9am to 6pm.

After we got home Rich went directly to bed.  I was exhausted but went out to do chores anyway.  Heck they needed to be done.
The yard is getting too long and shaggy.

I fed the animals and tried to figure out how quickly I could move everyone to summer pasture.  It would cut down on my work by hours each day.  And as tired as I was getting, that would be a great thing.

Rich had his first IV tube feeding.  Actually it is just a gravity feeding to his PEG.  He had been a pretty poor patient about taking extra nutrition through Miss Peggy.

As nurse Ronnie had said, if he didn't start being a bit more proactive in his eating and nutrition, they would admit him to hospital.

Naughty me, I thought ... in the back of my mind.
Oh!  Really?  Please do!  I could use a couple of days to tend to all the things on the farm!

My Patient-husband can be a real grump and actually he has reason to.
He keeps telling anyone who will listen that he sure didn't bank on being knocked down by the Chemo like this.
Side effects from the Radiation Treatments will make their presence known soon.

The cancerous lymph node has gone from 3cm to 2cm.  At least that is what the doctors are saying.  This is good news to hang on to.


I checked the calendar and counted it up ~ after today:

25 more Radiation Treatments.
5 more Chemo Treatments.

Yesterday's lessons.  
Have pull up adult diapers on hand in case...
Make sure patient takes his anti nausea pills and stays with it.
Make sure patient eats.  Make sure patient takes Jevity.
Pack your car as if you were a pharmacy and add water bottles, clothes, and notepads.

For the CareGiver:
Go to bed.  Sleep. 
It is normal to be frustrated.

All the caregiver information I read is to get someone to come in and give you a break.
This isn't really possible when your day is taken up by travelling and farm chores.  
But I will be addressing those issues very quickly.

Today is Friday.  I hope it goes well.

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.

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.

The Difficult Patient.

Today Rich had a very hard time with his 'gag' reflex.  He wasn't able to put in his mouth pieces for the Radiation ... Tomo Therapy treatment.

They ushered him to the waiting room while a tech went to trim the mouth piece so he wouldn't gag.

He got through his session but literally splayed on the waiting room couch.

Soon enough, we went to another waiting room where our male nurse ushered us into a room.

He lectured Rich on using his anti-nausea meds to keep the nausea at bay. This was day two of someone telling him to take his meds.

He nodded as if he would follow directions.  The nurse also told him how important meals were.

Yep, he knew that.  But someone needed to make him feel better.  

The male nurse from the RAD department explained that more than likely he was feeling side effects from his chemo treatment.  The side effects from this week's radiation therapy would effect him next week.

I indicated that he had not been eating and of course Rich argued that HE had eaten.  And that he had 2 shakes last night and a bowl of cereal this morning.

I sighed.

Rich had slept most of the way in to MAD city and all of the way home. When we got in the door he mumbled that he was going directly to bed.

I insisted on his nausea medication and then his normal noon time meds.
He shrugged and headed upstairs.

I brought them to him and he took the meds.  I checked the fluid level in his CPAP, tucked him in, and proceeded to do the things on my "To Do List".  
This included getting him a wedge pillow, some Boitene rinse for his mouth and making phone calls.

Okay, this may sound a bit selfish, but I went to visit my dog at the Chiropractor's Office.  Damn, if Morris wasn't into his job. He was busy greeting patients and walking them to the door when they left.

He greeted me and then went back to 'work'.  He is in his glory and so is my good friend and wonderful Chiropractor Dr. Bjerke.

I was almost annoyed that my dog was Mr. Sociable and treated me as if I were one of the patients.
I'm smiling as I type this.  We should all be blessed with a wonderful dog like Morris.  I'm glad he is busy working and not stuck in his crate all day.

I worked at chores in the light rain and even began to set up things for moving animals this weekend or perhaps next weekend.

Tomorrow is Chemo Day.  Since my husband will be attached to an IV for 4.5 hrs I can talk to the nurses to see if they have any helpful hints as to 'how' to convince Rich that he needs to eat no matter how tired he is.

Eating and nutrition is the key to getting through Chemo and Radiation Therapy.

And this cancer has over a 90% cure rate.

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.