This is a Long Journey

In 2015 Rich went through lengthly cancer treatment for throat cancer, Stage IV. 

In 2017 Rich had a stroke, in 2018 he suffered from a PE. A double Pulmonary Emboli. Each of these medical instances could have ended his life.
He also has COPD. According to the medical notes on file, it is Stage 4.

The doctors think he is amazing as he has really beaten the medical odds. 
He also has MDD which is treatment resistant. [Major Depressive Disorder]

Rich can speak fairly well and sometimes he does lose what he wanted to say or the words evade him. We've been a close couple for years so generally I understand what he wants to say, but let him work it out unless he is too frustrated. Then I help him. His memory of things in the recent days evade him too, as well as those memories from just a few years ago.

These things are not really important. NOT to me. What is important to me is quality time together.

Our meeting with Palliative Care this week was very emotional for him. He knows that his COPD is an end game for him and he has always been rather Cavalier about it. Thursday he was not.  His breathing is a struggle for him and it limits his activity.
His MDD is a huge black wall that keeps him from finding any joy in his life -- this he tells his doctor.

Finally and tearfully, he admitted that he'd just like to go to sleep and be dead. He is not suicidal but he sees no point in continuing in a life where he loses memories, struggles to breath, and has no motivation for life. 

Can you imagine how awkward it feels for him when he ... the tough guy... breaks down and cries while on a Video Appointment with his provider? His Palliative Team sat quietly and let Rich gather himself. Of course she asked if there was any thoughts of suicide and he said emphatically NO. 

He is tired. Tired of not being the productive go get 'em guy that used to whip out the chain saw and cut up fallen trees. He is no longer that dude that had never ending strength and energy. He is tired of being tired. Tired of his words not forming and lost thoughts.

We discussed second opinions for his MDD and other more radical treatment. He just asked 'Why?'

This is the time of year that his MDD really kicks in. The days are shorter. The dark is longer, even with a SAD light, his overall mood is darker.

His Palliative Care doctor is adding a low dose of morphine twice a day to his meds. 

We are marching towards the end in a steady fashion. 

While visiting his Community Care Primary Doctor last week, he mentioned the very same thing. Wishing he could just die.

His PCP said she understood but she felt he shouldn't say it in front of his family as it would cause them pain.

I looked at her and sort of shrugged. She is a doctor that works in a clinic and doesn't live with a patient like this day to day. 

His comment is not painful to me at all. It is the truth. I listened to his mother say the same thing while she slowly died from Stage IV kidney disease.

Just let me go. 

In Palliative Care, the doctors want to make him comfortable as his disease progresses. His Palliative Doctor and others would like to see him try some of the newer treatment for his depression. Those treatments would require 3 visits per week at the average of up to 6 hrs per visit at the VA. That would create 12 hour days for us with a 90 mile drive each day. He said NO.

Regular doctors want to 'fix' things, it is in their nature. His PCP was willing to get referrals for all sorts of tests. Rich said no. He didn't care if his heart was giving out. He lifted his bracelet and reminded her that he had a standing DNR order in case of heart failure.

So we wait until next week and see how the morphine goes.

And of course, more Lego building. He seems really fascinated by it and it is an activity, oddly enough, that makes him laugh when I screw up. Last night he even put a few small pieces together.
To me? 

Priceless.

Depression 101

We met with Dr. Lindsey, she is young bright and a psychologist. She is doing her stint at the VA Hospital.

She asks Rich if he knows why he is there? He squints his eyes and seems to think. I've noticed over the years that the eye squinting comes just before his answer which is:

"I want to feel better. I just want to feel better. I feel like I am dying bit by bit."

This has become his new mantra of sorts. Anyone asks him how he is or how he is feeling, that is his answer. As I watch the doctor glance at him and scribble notes, I realize that the words are slightly different but the answers have been consistently the same for all of the years I've known Rich.

Lindsey asks him if he knows what causes him to feel this way.

"I don't know. I just want to feel better. I am tired of feeling like this."

She looks at him and me and then prompts him by asking if he read the letter from the neuro-psychologists. He shrugs. Their letter with multiple diagnosis of his medical issues weren't of interest to him. I let her know that but tell her that I did in fact read it to him.

Rich shrugs.

"Rich do you know that you have also been diagnosed with Major Depressive Disorder?"

Another alphabet diagnosis I think. In medical shorthand MDD. A light goes on somewhere in the back of my mind. And for some reason I am not surprised at this diagnosis. It makes sense, I felt his meds were starting to fail him, but as always his re-occurrences of depression always have a way of sneaking up on us.
So it was official. MDD. This explained quite a bit.

Lindsey continues, "So Rich I am here to help you figure out how to feel better and break this depression cycle."

He looks at her and squints again. "I have no idea how you think you can do that."

She doesn't get discouraged. Good for her, I think. Lindsey begins to explain the methods of getting a person out of major depression. She asks questions and he haltingly answers.

It almost seems as if he doesn't want to get better. But then I am not surprised as this is the depression stacked on top of COPD, and PTSD along with stroke and the some level of dementia or cognitive dysfunction. I wonder how in the hell are the doctors and I are going to pull him up and out of this.

Lindsey draws a map for Rich to explain what she is talking about.

"You want to feel better," she says, "this has to do with your thoughts and feelings, we need to help them. One of the ways is to get out and do something. Get away from the bed and be more active."

He grimaces. "I can't. I hit that wall and if I don't lay down, I'll tip over."

She thinks a moment and then asks, "Are you a fall risk?"

"No, I am fine. I just get so tired." I can see by his expression that he doesn't believe her.

Lindsey draws out something on paper and shows it to him.

[I took the liberty of going into Photoshop and making the following graphic to mimic her hand drawing. I chose bright colors because I always want to feel hopeful]

"Your behavior effects your thoughts. If you start here and get moving, doing something different that you used to enjoy then your feelings will improve and your thoughts will improve."

He stares at the paper and I know he doesn't see it.

The discussion goes on for a while. I suggest fishing. Rich says he 'can't'. What if he gets short of breath? I reply we'll have 02 along. What if he gets tired? We have seats in the Subaru that recline. What if he can't ... make it to the car? We bring fold up chairs.

Lindsey uses encouragement and Rich is given an assignment to go fishing. [Now looking at my calendar and the weather, I see no time for fishing.]

Then Lindsey does something surprising.
She turns to me and asks, "How are you doing?"

"Honestly? Some days I have no idea. I get frustrated, short tempered, ..."

"What sort of support do you have?"

"I have a neighbor who will listen. There is a group that meets in Viroqua once a month but generally I have appointments that day and it is during the time I need to be doing chores."

"Would you consider counseling?"

"Can't afford it now that I quit work to take care of Rich." I state.

Lindsey reads her notes and then says that the VA will provide those veteran spouses with care when the veteran is 100%. I am surprised, I knew about that but never had anyone at the VA approach it.
Lindsey says she will look into it. I believe she will.

Our ride back from the VA is long and I am tired after 3 appointments. Rich uses his 02 while he sleeps in the passenger seat. My mind mulls over the depression issues and how can I work to get him to 'move'.

When we get home I tell him that he will feed the two donkeys every day like he used to.

He fires back at me: What if I can't make it? What if I can't walk there and back?

Me: Then I will sit with you in the dirt until you can make it.

Him: What if I get out of breath?

Me: I'll bring you oxygen.

Him: Oh like this is going to cure me huh?

Me: Nope. But if you keep laying in bed all day long and never moving, you will make yourself worse, your heart will fail, your lungs will fail, and your mind will fail. Move it or lose it. You tell your mom to move, you need to take your own advice.

Him: I'm going to bed.

Yesterday though, I stood my ground and he did walk to the shed and get flakes of hay to feed Thor and Bob. It took an extra hour or so of my day. But it got done.

Depression is an ugly thing.

Offering some hope

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

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

"How are you today Mr. Ewing?"

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

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

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

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

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

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

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

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

Rich makes a face.

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

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

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

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

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

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

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

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

Visit with Rahim/ Chemo Oncologist

The blood labs turned out fine and Rahim basically met us with a follow up.
He let us know that he was scheduling a follow up CT scan that he thought should have already been done to the one done in Boscobel in August.

"Just to be diligent," is what he said.
The August CT scan had some 'things' in it that should be looked at again.

Um.  I don't like that.  But I recall asking the attending doctor at the ER what exactly did all the techno stuff mean?

His answer?  See the VA and have a bone scan also scheduled.  This was the doctor that had seen us 9 months before the VA caught the throat cancer and had said to Rich...get ENT to see you ASAP.

Okay, so I'm not going to obsess over another scan.  Rich has already said if there was more cancer to deal with in the future, we would only treat it with Palliative Care and nothing else.

So far things are good, the basal skin cancer will be removed next month and we see a doctor this month to check on the floaters in his eyes.

The stroke has affected Rich's eye - brain co-ordination and he is supposed to doing home assignments exercises for that.  He does it when he feels like it.

Too busy to take 5 minutes or 10 minutes a day for it.  I'll have to insist on more Tai Chi if I can too.  He has dropped the ball on that.

So here it is 13 months from the day he came home and said the word Cancer.  
He is doing pretty well I think ... and so do the doctors, for going through a very rough regime of treatment and all of the things in between that he went through.

However, Rich thinks he isn't doing as well.  His weight has stayed fairly stable.  Up and down a few pounds with each doc visit.

Onward.  Let this March be a much better one.  Eye surgery and at the end of the month?  Remodeling begins!

6 Month follow up and CT scan

December 17th.

The long drive to Madison seemed to take forever.  We listened to the radio and commented on how wet our winter was so far. We talked about just about anything and everything but what we were going for.

A follow up CT scan 6 months after the last radiation treatment.

It seemed long ago, yet such a short time ago. Was this going to be fine?  I don't know what Rich thought because he didn't seem to be worried about it.

Both of us were in a fairly positive mood.  The long day at the University of WI Hospital didn't really excite us much.  We found the lab and got the blood work. We found the cafeteria and both of us had great lunches.
UW Hospital of Madison is one of the most frustrating places to get around in. Nearly every first time to ... well, even us after 35 some visits, sometimes have to ask for help to get from one place to another.

Finally we were in the waiting room for Radiology Oncology.  I recall our first wait there.  Scared to death of the unknown that was to come.  Frightened and nervous.  I wasn't frightened now, to say I as not nervous would be an overstatement.

I was just hoping for good news as was Rich.  We'd found that doing Tai Chi together had really helped his overall feeling and general attitude.  He was better than when Dr. Witek saw him in September when Rich still felt exhausted from the treatments.

His name was called and we went into Witek's exam room where his Medical Assistant took his vitals.  Rich's weight was pretty good. It was 179.  He'd started cancer treatment at somewhere in the 190's.  But the weight loss had actually come after the treatment stopped.

Rich hadn't seen it himself, but he'd been more active around the farm and of course not having all of his teeth and the saliva issue had curbed his appetite some.  Over the past few months, his weight had settled right around the 178 or 9 lbs.  

The hair he'd lost was coming in. In back where the tomography targeted radiation had caused a complete loss, the hair was coming in black and curly.  A startling difference to his mostly silver straight hair. His goatee was black on one side too.  I thought it was pretty cool how one side of the mustache and goatee had come back in such a dark contrast.

Dr. Witek walked in and turned on his heel to face Rich.  
"Good news man! It is all good, nice and clear CT scan!"
Rich grinned, I felt all the air go out of me and felt joy.

Dr. Witek asked about Rich's vision and mentioned that the CT scan in September after the PET scan had shown a significant stroke in the occiptal lobe of the brain. 

Rich waved his hand and said things were better. He was doing Physical Therapy for that and Tai Chi for overall balance and besides, it made him feel relaxed and good.

We inquired about his wedding and Dr. Witek grinned and began to show us photos and talk about his wedding.  It was a very happy moment between Dr. and Patient.

He examined Rich and then made a time for follow up. He stated that Rich had had enough radiation for a while and the next visit should be in April and no CT scan.

It was the most beautiful Christmas Gift we could have gotten.

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.

Nearly 3 months out of Radiation

Rich had his once a year physical with his principle provider this past week.
She went over his med list and I gave her the CT scan results and ER results from the visit we made to the Boscobel Hospital two weeks ago.

His continued main complaint is exhaustion and being tired all of the time.

When dealing with a person who has had a horrible illness like cancer and especially the very difficult treatment regime that goes along with it, recovery can take a long time.
The chemo and radiation therapy took a heavy toll on him and he feels he should have bounced back quickly.

On the 15th of this month we have the PET scan.  I am nervously wringing my hands.  Questions fly through my mind while trying to go to sleep.

Is it all gone?  Is it going to be okay?
How are we going to deal with this tiredness?

Then we get a phone call from the clinic in Baraboo, they want to set up another CT scan as they read there was a lesion on Rich's right adrenal gland.
Okay.  I've done a bit of reading and this could be nothing, or it could be something.

Or in fact, it could help explain the sheer exhaustion that he has been having.

I read his last blood panel.  I wonder sometimes if a person could be too informed.  It is good to know your results, but then again, do those numbers really show the true health of the individual?  Do we really want to know exactly everything?  Would I want to add worry?

I think not.  Certain parts of his blood panels were high and others low.  However, his primary care doctor handed them to me to put in my file....and really didn't say much about the results.

His red blood cell count is still low but not significantly. She did mention that.

So now we wait until Tuesday. Both of us are on edge, Rich won't say it, but I know it is on his mind.

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.

Meet with Docs and mega power meals

Good news.

His daughter took Rich this time for his Chemo treatment and she took the voice recorder.

So yesterday he found out that he only has three Chemo treatments left.
Halfway home with that!

And this Friday will be 13 Radiation Treatments under his belt. That means 20 left.

It is amazing that he is still swallowing and eating according to the doctors.  Yes there is pain involved but he manages to eat.

Yesterday the doctors were amazed.  He had actually gained a small amount of weight from their weigh in last week.

I listened to him brag on the 'cooking' of concoctions that I'd been making all along.  
One dish I made was a layer of ground beef in a lasagna pan...extra ground up.  A layer of cheddar cheese, a layer of mashed potatoes, more cheese and then topped with bacon.

Doesn't that just scream calories and carbs?  Well even with a sore throat Rich as able to eat that.
We've also done a lot of scrambled eggs.
For snacks, I've made power drinks out of Ensure protein powder, yogurt, whole milk, malt flavor, fruits .. or chocolate, and ice cream.

Apparently these drinks go down like silk and he has up to 3 or 4 a day.

Today I will be making a soup that I can then blend slightly to make it easier to eat.

I'll freeze it in small packages.  The cheesy scalloped homemade potato dish disappeared last night so that is another meal I can make.

Another postive note.  Dr. W from UW said the tumors are receding.  Yesterday Dr. R could 'see' the difference by looking in his throat.

These are all positive things.  Yet Rich still is fatigued, weak, wobbly, and woozy.

After all, he had his Toxic Cocktail yesterday.

I am actually getting a break from being Care Giver.  I think it was really needed.

Emotionally I am feeling better.  I think a long nap will be in store for me tomorrow as it is supposed to rain most of the day.

Today the sun is shining and I think I have some things I'd like to do just for me.

Here we go again...consult with Chemo

Apparently our start date was not yesterday.  We awaited a phone call from our Coordinator at the VA in the Chemo clinic that had told us last week that our 'start' date for therapy was going to be Monday.

The frustration of waiting two days for conformation was exhausting. Not only that, it made planning anything very difficult.

However, Monday has passed and we have appointments today to check the PEG tube aka Miss Peggy.

So we look forward to today.  Today we may get more concrete information as to what THE Plan is.

We can hope that today is the day that they lay out the plan for us. Otherwise we could be pretty disappointed.

Enter the whirlwind

We checked in at the Kiosk for the Dental Clinic.  The printer shot out future appointments and we both looked at the date.
March 31st.
MAD Oncology.

So things were moving quickly and we were not even aware of any meetings with Oncology.

We sort of had to chuckle at the 'shorthand' that the VA used for its appointments.  Appointment at the Madison VA were shortened to MAD and then a dash followed by the clinic or doctor a patient was seeing.

Dr. D. presented himself after x-rays and did a dental exam.  He told Rich that he'd be removing some teeth.  Because of the Radiation Treatment oral issues can happen.  Removing teeth that are not in good health was standard protocol.

Dr. D. is quite the character.  He explained some things to Rich but wouldn't go any further to say that he has known people with this cancer that had done well and tried to set our minds at ease.

Of course he couldn't tell us what he knew that would be up to the Oncologist. We left MAD Dental and headed home knowing we'd be coming back in a few days.

Our drive home was pretty quiet.  We watched the last of winter melting away in the farm fields.
Rich asked some questions.
"Did Dr. D. say he was taking just two teeth?"
"Yes."
"Now why was that?"
"They could cause issues once you started Radiation Therapy," I replied.
"Oh, I don't remember that."

I decide my next step was to get a digital voice recorder to start bringing to our appointments, especially the upcoming one with the Oncology Department.  The 'MAD' one.