Anticipatory Grief part II

 I wrote a blog about Anticipatory Grief on March 2, last year. I'd never really heard about it until there was a remote class via the VA Caregiver Social Workers last year.

It wasn't exactly a 'happy' post, more of a reflection of what I thought I knew and understood about the term Anticipatory Grief. I'm glad I did the class. I also thought I'd had it all figured out. 

Insert a big laugh right here. I like to think I can handle all things tossed at me. 

Well, things have changed radically. I actually have adapted I think fairly well. I knew I could possibly enter a phase where I had to do most everything for my husband. The damage to his memory and thinking skills are now more evident from his resp. failure. 

Shay, who is a young single mom and our respite gal said she and Rich had good conversations and that he seems to be okay with what is happening to him. He seems settled and at peace with it.

She then asked me how did I feel?

I said I was good with it. After all, Rich and I set up our Estate plans and Living Wills in 2012 and we had these discussions about aging and illnesses before he had cancer in 2015. The doctors will argue that his cancer treatment gave him at least 10 more years of life.

What didn't happen is good of quality of life. Doctors would point out that he was still 'here' and that he was able to visit with family. The cascade of issues that followed in the next two years took everything he lived for away from him.

Living day to day became a struggle combined with Major Depressive Disorder. His PCP told him not to feel sorry for himself as there were others worse off than he was.

[Yes, she said that and I immediately asked to be transferred out of her care.]

That is when we transferred to Palliative Care. His issues were dealt with and no shaming for being depressed or feeling hopeless. No intrusive exams. Pain management and mental health support were vital to him.

We stayed with the Palliative Care Team for 6 years.  

So back to the question. How was I dealing with the fact that we were now in Hospice Care. My mantra was 'I'm good with it.'

I understand the implications. I understand that my soul mate is dying. I also wonder what happens after. 

Wait.
I lose half of me in a way. We've been partners for 30 years. We've been part of each others lives for that long. For the past 10 I've been his 'Care Giver'. For the past 30 my life has been helping him negotiate his daily life which included many times in and out Mental Health Admissions. 

I was once asked why I'd hang around someone like him. My reply was pretty simple. He is an honest man, he loves intensely, he has a true heart, and he doesn't play games with people's emotions. And. He is my partner.

So.

While driving to town to get some groceries two days ago, a song came on the radio.  I don't recall what the song was. But I did have to find a spot to pull over. I parked on a side road that overlooked a trout stream.

It hit me.
Yes, I am prepared. Maybe. I am prepared for what happens and the process of his dying. 

Maybe I am not prepared for the 'afterwards'. 

Bones

I am writing this in this part of my blog as most people won't read it but I want to sort of track what I do with my health issue of osteoporosis. Perhaps my journey can help someone else make decisions.

I'm scheduled for a new scan to assess my bone density issue. Yesterday, I consulted with the endocrinologist, and by next Monday, I'll receive an updated reading. We explored several options for my future treatment.

Admittedly, I'm not thrilled about possibly needing medication for osteoporosis. Since my bone-building years are behind me, I require assistance to increase bone density.

As a child, my nutrition was excellent, supporting bone development. In contrast, my college years were marked by poor nutrition—typical dorm food—lacking in essential vitamins, despite rigorous training.

Being petite, female, and white also places me at a higher risk for osteoporosis, although I've never experienced a fracture.

We discussed a newer medication called Evenity, designed to enhance bone density over a year. Following that, I would have to transition to a biannual Prolia injection, provided I tolerate these treatments well. [Crossed fingers]

Reflecting on my age, I acknowledge the inevitable changes that come with it. Our bodies, including organs and joints, deteriorate over time. We turn to doctors for improvement, yet they cannot turn back the clock or always decipher how to heal us. The human body is complex.

We chase youth, health, and the reversal of aging's toll on our bodies, despite knowing there's no fountain of youth.

The advancements in modern medicine are astounding. Joint replacements, organ transplants, and treatments unimaginable a decade ago are now realities.

I'm going with this:

If you want some fun, look up 'curing osteoporosis' on the internet. You will get some really wild suggestions. I know, I looked. 

I've had acquaintances send me podcasts and TikTok links [sorry didn't open them] on how to Cure osteoporosis also. 

I'm not dying. I have a condition that is not painful, until of course I get a compression fracture or bust a hip or something. 

I want to continue my way of living, hiking, and adventuring as long as my body will allow it. 

A day in his life, what Quality?

My once very vibrant, contentious, fun, frustrating, funny, and bull headed husband is slowly fading away from me.

This year though, his mood is better. It all has to do with the constant photos we receive from my oldest son of our newest little grand daughter. Some mornings, Rich taps my phone to watch 20 second videos of Rory just doing normal baby things. He loves to hear her voice and her cooing as well as her antics.

He had another TIA which concerned the doctors who wanted to order a battery of tests and a slew of medications.

We reminded them that he is in Palliative Care. He wants no new tests. He wants only to be left alone by the medical people and as remain comfortable as he can be.

He commented that he'd be happy enough if he just died in his sleep.

The attending ED doctor looked at him and then me and said, "But maybe you don't really mean that. I mean, think of your wife. This may be painful for her to hear."

I pipped up and replied, "He has no quality of life doc, this is something we have discussed and thought about. No one is prepared for their life to end. But then again, he doesn't have to fight through all of his illnesses and put on a brave face for me. I am with him 24 hrs a day and see his continuous struggles. You don't. Believe me, it is okay and not painful."

A nurse came in and commented that he had gained weight and perhaps he should look into losing some weight and eating healthier... and maybe doing some exercise???

I walked out with the nurse and asked if she'd looked at his chart. I gave her the stink eye and said her comment was appreciated, but totally uncalled for. I'm sure she meant well on her 'high' horse. But I kindly took her off that and dumped her on the ground as easily as possible. Her comments, I told her would resonate better with a patient who was young and in good health, but perhaps not someone in end stage COPD.

As good as doctors, nurses, and all medical staff are, some have never lived around the clock with a person who has lost their previous lives. 

In fact not many people really REALLY know what a spouse/sister/Aunt/daughter/son Caregiver really go through at all.

It is something so many do silently and without much complaint. 

~~~~~~

My husband's day starts when he gets up at whatever time. It can be 5 am or 9 am, there is no rhyme or reason.

He has 2.5 cups of coffee...exactly. He can make his own instant oatmeal some days, some days not. I have to carry his coffee for him or he spills it because his hands shake so badly. His coffee sits on an old hand towel to catch what he spills as he sips it.
Sometimes I have to feed him. Again, the shakes. And oh the embarrassment and self loathing that follows that!

I fill bird feeders, hummingbird feeders and arrange them each morning so he can watch out the window and try to tell me which birds he sees. He has aphasia so the bird names often come out oddly, but I know what he is trying to say. He's had word finding difficulty since 2017. I'm used to it.

He can be delightful and funny still. He also gets quiet and it seems that I lose him to another world where he is shut in his mind. 

In two hours after breakfast on the dot, he is ready for the morning nap. That lasts until noon. He gives me his order for lunch. I make it. We eat together and chat about whatever. I put Lego minifigs on the table and play with them. He laughs.

At 1pm sharp, it is time for a nap unless it is dry enough for me to bring him the riding mower. If he can mow, he is happy. I help him onto the mower and situate his oxygen. He takes off wearing his cowboy hat and shades. 

I think it makes him feel free and worthy to do the big yard. He is mobile and he is good at it. Sometimes he bumps into things. 

When he comes up to the porch on the mower, his smile is huge. I help him off and it is time for a drink of water and a ... nap.

On days he can't mow because of the weather, he sits at the table and watches the birds. When that bores him he lays down again.

His schedule revolves around routine. After the 1pm nap which is short, he watches mysteries on the TV....until it is nap time again.

By then we are close to supper time and he asks me what we are having for supper. [He can never recall what I tell him about supper or other things] 

*I forgot* is his new mantra. And it is true. He talked and listened at length about things his daughter was telling him on the phone on Father's Day. His end of the conversation was ... "Oh" "Yes" "Hmmm"

When I asked about what they discussed over our supper, he looked up and shrugged. 

"I can't remember."

Long conversations on the phone are good. He likes to listen. But he cannot recall what the topics were. He can rarely recall what I planned for a meal after I've told him. Some days he can't navigate the TV. 

He has developed a rather alarming cough which is part of his COPD. He has more and more trouble breathing and his intercostal muscles surrounding his ribs hurt from coughing. If he goes without O2, when waking up and changing from his CPAP to his concentrator, his O2 levels drop below 80%.

I feel guilty, because some days I wish that his suffering would end. He once said that if he was an old hound dog, his owners would never let him suffer this way.

He wonders often why humans have to suffer when pets didn't.

Revisit Angry Depression

My husband now has a list of medical conditions that could make any physician scratch their heads. His PCP last week had to deal with his newer condition of Depressive Anger.

The least little thing will set him off now.

It was a pretty bizarre evening last night. I had made a cake and a pretty decent supper. I know eating supper together has always been pleasant for us. Well not last night.

MDD, Major Depression Disorder has come back something fierce. At first I thought it was acceptable because of his issues with the Pulmonary Emboli in both lungs and the hospital stay and the pain in the knee from the bursitis that was excruciatingly painful..
However he said he 'hurt all over' everything hurt. [I've learned over the years that MDD causes the body to hurt all over...it is a sign that he is going into a very bad place.]

He had a major fight with his daughter and yelled at his mother on the phone last week.

Instead of leveling off, the internal and external anger has become more pronounced.

Living with MDD is interesting. You need to have thick skin and emotional walls of concrete.
I set him off in a rage yesterday after working outside for hours, I came in to check on him and to make him something to eat.
I walked into the bedroom to see if he was okay and would like something to eat.

He blew up.
How dare did I interrupt his nap?
Why couldn't he get any sleep around here without someone bothering him?
He got up and tossed the covers aside.
I'm tired and I wanted to sleep so I could shower! And you won't let me!
I replied that I'd been outside for hours and ....how was I to know? I knew the nap for a shower wasn't really a reason for sleeping. Showering had become another new issue for us. Before I could assist him with showers while he was recovering. The last time he did a major portion of it by himself.

The fact that he did not care if he was dirty or smelly and would fight my suggestions for getting washed up was a huge indicator of his depression.

YOU just won't stop bothering me!
He came up and began to poke me with his fingers and imitated as best as he could my voice:
How are you? Do you want something to eat? Can I get you something? Why don't you take a shower? Want to wash up? NAG nag nag!

He poked and poked.
I'm going to wake you up every 30 minutes tonight, see how you like it.

I stood still and silent. No arguing with Depression Rage or whatever you want to call it.
I silently wondered if I could get him in the car and take him to the VA Emergency Department. Sundays were generally bad days for that. And the thought of a 2 hr drive with Rage in the other seat was not anything I wanted to consider.

He went on to other small inconsequential things that I have done over the week. One of the items he was furious about was that I was selling one of my older cameras. He simply went on and on.
I remained silent as One, it was my camera. Two I rarely used it anymore, and Three how did it matter in the larger scheme of things?

Silent. You can't argue with The Transformed Man. Once that ball of anger gets rolling it keeps getting larger and larger.

Last night we went to bed.
He pulled the covers off me.
Then waited until I put them back on.
20 minutes later he started poking my shoulder and asking Are you Awake? How do you like that?

It was juvenile, I admit. But I knew he'd fall sound asleep soon.
I decided to move a bit later when he fell into deep sleep.

I don't understand why his PCP didn't ask for intervention when he argued with her earlier this week.

The scary part of this? I responded with nothing. His tirade never even phased me.
After his oxygen delivery today I will risk asking him to go to the VA ED.

He Ain't Done with You Yet

Rabbit to Bear: I will always be by your side.

And the Principal Care Provider looked up at my husband from her computer and the mess of sheets from Gundersen Lutheran Hospital in front of her. She sighed and then asked how are you feeling?

"Like shit," he answered simply. Dr. Sauvery knows Rich well enough to know that means 'overall crappy in health and mood'.
"Depressed over this?" she asked.
"Well, of course."

She nodded. "That was a significant PE that you went through. Frankly I am surprised you are alive. Very few people survive what you went through so I guess you should feel lucky?" Dr. S is straightforward and she knows Rich wants to hear it that way.

"Lucky?" he asks with a glance at her and then the floor, "Lucky? Well I don't know about that. I may feel better if I was dead." His hand comes up shaking a bit from his enormous fatigue.
"To live like this? This is not being alive."

She nods, "Yep, your are right, but you survived and you need rest and you WILL feel better."
She does and exam as she talks. "You are amazing, all of these things you've been through would have,"...she shrugs, "you must have amazing genetics and you must be here for a very good reason."

Rich looks tired and worn out. So Dr. S sits next to him and puts her hand gently on his arm.

"You go home and rest, follow your meds. YOU let Christmas come to you and New Years also. You set in that easy chair and tell the kids that Grandpa is tired and needs his rest. You enjoy those kids. You enjoy them seeing you. Have family make visits but be short. This is winter and the weather is yucky, you don't have to go out and do stuff outside..."

This was the longest 'speech' Dr. S has ever made. Then when we stood to leave, she hugged Rich and then me. Her parting words were said quietly, and I don't believe they were meant for Rich to hear...or???

"Watch over him as you do. You are an Angel at his side."

We check out at the desk. Rich has known the receptionist there for many years. She asks, "Dang Rich you were in the hospital again! What happened?"
He responds, "Well I guess I am lucky to be here, most don't make it through the really bad blood clot thing I had I guess." He shrugs.
The place is quiet and the other receptionist steps over.
She has a very southern drawl.
"Sir, I think God put you on this Earth for a reason and ain't done with whatever He has intended for you."

We set up the follow up appointment, Rich comments quietly, "If I make it to spring."


I helped my exhausted sweet heart get into the Subaru and get settled. The sun was getting ready to set in a blaze of colorful glory. Rays of light blasted through holes in the clouds and went up into the sky while another set lit up the countryside.

Rich reclined in the seat and was silent for our drive home.

Rest.
See your family.
See your Grand children.

My mind went places it perhaps shouldn't have.
He had cheated death again. The Grim Reaper had knocked on the door a week ago on that frosty foggy morning.
Exactly how much more pain and discomfort could a person live with.

"Sir, God put you on this Earth for a reason and he ain't done with you yet."

I wonder. And I drive home in the quiet car and fight back all sorts of thoughts and emotions.
I reach over and lightly hold his hand while I can on the nice straight parts of the road.

We've had quite the journey together, I think.

Brain Drain

Dementia with Behavioral Disturbance, unspecified dementia type

This is the Primary Diagnosis for my Mother in Law.

What does this mean?
According to the some articles Dementia is now considered a fatal disease. That said, let's not freak out. Let's look at it logically.
Our brain is an organ that controls the rest of our body. It controls all of our organs. Think of it as our hard drive.
If a segment of the hard drive gets 'corrupted' certain functions of our computer won't work.

Rich is the Financial POA for his mom. It may be a job he is not capable of in the long run. His sister who is 'second' on the POA forms will be moving to Utah in about 8 weeks.
She spent the last two weeks with MIL, seeing how she'd fare in her apartment.

Well, MIL can do most things but her memory is a huge issue. MIL recalls that Mondays at the nursing home are days that they take baths. Her weeks are foggy to her. Certain things from the week before get lost in the memory fog.
So she may not realize that a Monday has arrived and needs that help.
Details regarding medications do stick with her, but if the pill manufacturer changes in any way, she gets rather upset and positive that her meds are incorrect.

Sometimes she has trouble telling day from night.

I signed up for an 8 hour course at ALZ.org, if nothing else, I can learn a bit of how to deal with some of the day to day issues that arise with dementia. Communication is one of the biggest challenges. I need to modify my way of thinking and communicating. The course is free.

We've contacted an attorney and are getting some social workers to her apartment to conduct a Home Evaluation. MIL is sure she will get her 'mind back' and be done with the family invading her spaces. I get that as she has been a strong willed woman who is fierce about her independence.

I've contacted Helping Hands to come out and meet with the both of use also. This way she can have another set of eyes checking on her as I cannot be in two places at once.

We will be investigating Guardianship for mom too. That would allow the family to be family and not be the 'controllers' of her everyday life. 

Chronic Kidney Disease is closely linked to issues of behavioral disturbances, dementia, depression, and sleep issues.

Chronic Kidney Disease was her primary diagnosis but she has declined to the level of having 'Dementia' along with it. 
One wouldn't think that Kidney issues would affect the brain, right?

The kidneys take out toxins in our blood and dispose of them. However, when the kidneys can't do their job, those toxins reach the brain.

No one likes to think of their parent as infirm. MIL's decline to this present state was very slow, so slow as to be imperceptible except for the past 6 months. Her lack of self care was evident, however we could not force her to seek medical care. It wasn't until she had a fall and was taken to the hospital that we were able to finally get her the medical attention she needed.

To that end, she has done very well. Five weeks of Physical Therapy and socialization, walking, and being on a schedule all improved her physical appearance and the edema in her legs while she was in Rehab.

Since she has returned to her apartment, she has closed her door to the outside world and retreated to her chair and bed. 

I do look at the bright spots though. Some days she is the 'angry' upset woman, and then there are those days were she is sunny and happy. 

I will have to lean on Social Workers for assistance as I am already the CareGiver to Rich. I'm not sure how to navigate this new issue on my own.

One step at a time, just like our journey through cancer and stroke.

No Easy Answers

We've fought through throat cancer treatments and recovery. We seemed to do so well after that until the stroke came to strike out hard.

Well, the recovery physically from the stroke was amazing. Rich could walk, and move with no after effects. His speech had issues but most people can eventually get what he is trying to convey.

Then winter came on. Typically winter is his most difficult time anyway. Mentally it is draining because the weather is cold and the days are dreary. However COPD plays a huge factor in this too. 
Too cold? He can't breath outside. The cold air sends his bronchial tubes into spasms and it feels...well. No other word to describe it, like suffocation. Even with something over his mouth periodically to warm the air. Breathlessness or dyspnea is not a nice thing to feel. 

During the extreme cold days I have done the chores by myself. Even I have a bit of trouble while hauling a sled full of hay up the where the two of the bulls are kept. It is a steep walk in the summer and the winter. Extremely hot humid air and extremely dry cold air are enemies of getting your breath.

Depression has set in. It is like having a huge Black Cloak hanging over his head. Most mornings I pour his coffee when he gets up and give him a kiss. The he sits and stares out the window. The difference now compared to a year ago is the blank look of nobody there when I glance at him. I ask what he is thinking and he blinks as if the sound of my voice brought him back from....what he describes as 'No Where'.
He visits No Where quite often these days.

And when we do converse he talks about how he is no longer of any use, he has no purpose. If he weather is good enough for him to venture out and help with the morning chores, he gets dressed and goes about the morning routine.

When we come back in, he sits and stares off into No Where. Eventually he says that he *is not worth a damn* and gets up. He walks to the bedroom and goes to bed asking me to wake him up when it is time to water the stock.

Tremors. I'm not sure what to think of them. His father had what was called "Essential Tremors".  Rich has had them for a long time but they were a problem. Now they are in a very severe way. He can't carry a coffee cup across the room without spilling a trail of coffee. He feels terrible about it.

As his COPD meds are increased, I see a direct increase in the tremors. I looked up the causes of ET and found that COPD meds contribute to it. What a mean thing. COPD requires certain meds which in turn can contribute to worsening of the ET.
NIH had articles relating to the fact the ET are familial. In other words, it can run in the family. Rich's father had ET, Rich's mother has ET. It affected his fathers voice, it affects his mother's voice. At the young age of 68, it is affecting most actions that Rich takes along with his voice at times now also.

COPD unto itself is an insidious disease that is not curable. The doctors tell you to stay active. Simple to do if you can breath. 
Rich does stay as active as he can.

But the viscious downward spiral of COPD, the results of the stroke, the tremors, and feeling lost all add to a fairly significant winter depression. 
He feels somewhat hopeless and helpless. 

His only escape is to go sleep. And sleeping most of the day and the night do not help any of his health issues.

I find it interesting that the doctors say: You are doing so well! You made such a miraculous recovery from all the things that have been thrown your way!

To this man, each fight he's gone through has taken away a part of what he wanted to be and defined himself to be.
One counselor asked him to consider the fact that this would be his new normal.

I understood where she was going. Accept this and move forward.

I may be the type of person who can do that. But he can't.

He has always been a 'fixer'. If there was something that should be fixed, he'd fix it. Replace brakes? Muffler? Build a new and improved dog house? Insulate a water tank? All these projects are partially started and now sit gathering dust. 

He can't fix himself. He feels if he could understand exactly what went wrong, he could fix it.

In the past two weeks he has had other slight incidents that lead me to believe that he may be having a TIA. It happened quickly and was gone. Poof. 

Before I get told to rush him to the ER. I have. The results have not been exactly stellar. 
To be fair, the local hospital did do a good job in making sure that he was transported to the nearest trauma center. But only on orders from the VA.

Is there an easy answer to all of this? No.
Of course not. 

The End Game

Well here we are. The last entry in this blog was 8/16/16.
Rich had just completed one of his last check ups with the oncology department.

Let's jump forward to present date.
12/17/17.
On May 6th Rich had a stroke.
I wrote about it afterwards on May 12th.

I kept up with updating things and how I resigned from work 3 days after the stroke to stay home and assist with my husband's recovery.
He is an amazing man.

Cancer was big and scary. And it still hangs over our heads like the Sword of Damocles. Will it come back? Can it come back? Will we fight with it? Well, the answer to the last question is no. The other answers are unknown. Who knows what is in the future for us right?

I am now an unemployed caregiver. That is fine, everyone says how nice it is to be 'retired'. I'm not sure retired is the proper term at all.

Caregiver: A family member or paid help that looks after a sick or disabled child or elderly person.
Retired: Ceasing work. Having finished one's active working life.

I think unemployed caregiver is the proper term. Let's add. Farm help, chore person, house keeper, chief cook, and bottle washer. Appointment maker and so on.
Actually the whole process has been fairly good. Financially things are a bit tight, but all of our years of being frugal has paid off. We owe nothing on our vehicles and the only item left is the remodel loan.

I had felt that I'd be able to return to some sort of work by now. But that isn't happening.

Rich's COPD is not getting better. I don't know if it is related to the stroke or just the insidious disease marching down its timeline of destruction.
I know that sounds gloomy, but I am being pragmatic. It has always been the 'elephant' in the room. There is no cure and the end result is death.

So what is our next Long Road?

Our next long journey will be dealing with the after effects of the stroke, the continuing task of living with COPD and how we end up dealing with our lives until the end.

One thing we are not afraid of to discuss in our little house is death. It is there and it will be the end game for all of us.

So I will continue to write things here regarding how we deal with health issues and the end of life.

Conversations

From October 13th's 'Journal'

Conversations with Rich can sometimes be pretty difficult.  He is not always open to saying what he is really thinking.
He can be a very difficult person to read.


Dr. Faris asked how he was doing.  Of course Rich answered "ain't worth a shit."  This is his usual tag line and has been since pre cancer diagnosis.

Dr. Faris replied, "Help me understand, that fellow which is you...I hear up the hallway..." he gestures to the hall outside his office on the Mental Health floor of the VA, "always sounds robust and happy.  I can hear your laughter when you stop and talk to Chris in his office."

I sit back and wait quietly for Rich to answer this.  I've noticed the same.  While he is 'visiting' with VA employees, or for example other folks, he gets caught up in the conversation and so many people have commented 'what a great fun person he must be!'  

Rich is quiet for a split second.  "I'm pretending," he replies. "I'm not happy, I'm just acting."

My brow furrows and I try to watch Rich and Dr. Faris at the same time.  Pretending? 
I can't stop myself.
I blurt out.

"I believe then that you need to receive the Academy Award for Best Actor in Any Situation. You didn't have a good time at Jersey Valley?" 

I am referring to meeting with another couple the weekend before and how my husband and my new friend's husband had so much in common as did the 'girls'.  
Of course the ice breaker had been her beautiful red Mustang that both of our husbands- who had gone through incredibly nasty treatments for cancer- admired.

Rich shrugs.  I am floored.  On our way home we'd talked about how much we enjoyed our visit with Sue and Nick and their dog.  I look over at Dr. Faris who is watching carefully.

"So...," Dr. Faris says. "Richard, you never enjoy engaging with other people? Is that what you are saying? You are then the best actor in the world?"

A big sigh comes from Rich. "Yes.  I'm just acting out trying to be normal."

"What gives you satisfaction or peace?  Something like fishing?" Dr. Faris watches.

"No. Not even then, but I love fishing." Rich looks straight at Dr. Faris.  "My only peace will be found when I am dead."

I want to stand up and walk out.  I am shocked by his statement and I want to ask.  "Wow, don't I mean anything to you, doesn't your family mean a thing to you?"  I'm pretty sure that isn't exactly what he meant. He goes on and on about the grand kids, his daughter, my older son and my youngest son's children.  I know he is not pretending when family is around.  I know this deep within my heart and soul.

I wonder if my bewilderment and anger show.  I then remind myself that I am dealing with a man who has just gone through a very tough cancer treatment and suffers from PTSD.

I am left wondering if he truly believes that statement or if that is just what he feels today.


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

Today we visit with the Palliative Care doctor, it should be very interesting.

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.

The Day After the Pet Scan Uh-ohhh

Dr. Witek called Rich the day after the PET scan.

"Our techs were going through your PET scan again and I need to know Rich if you've been having trouble with your eyesight?"

Rich said yes, but we of course hadn't linked any vision changes with anything other than the possibility of normal aging eyes.  The eye doctor had found cataracts too.  We'd told Dr. Morris about that the day earlier and he said that radiation could increase the time frame for cataracts if a person were to get them.

Apparently 'they' found 'something' in the occipital lobe of his brain.  The something was something they wanted to identify very soon.  Dr. Witek had put in an order for a CT scan of the area.  The 'techs' had wanted an MRI but Dr. Witek opted for the CT scan as Rich is very claustrophobic.

There was a knee jerk reaction in our household.  Our good news had turned into a 'Something'.  An unknown.  

We had to go to the VA for Dental, Swallow Clinic, and Mental Health yesterday.  Rich's Dentist did prep work for putting in some teeth to replace those he lost before the radiation therapy started.  Since the Dentist can't place a post in the jaw for partials, he had to make a work around. Radiation in throat and head makes the jaw bone brittle and no teeth can be pulled for about two years without causing huge issues.

Our appointment with Dr. Faris was perhaps the best appointment of the day.  Dr. Faris deserves a nod and some applause as he probably went way past his quitting time to hear Rich out.

He let Rich talk on and on about the Old Days and how he could do anything and everything.  His main complaint is of course how terrible things are for him because he has no energy.  After a long while Rich said out loud, "Maybe I am just getting old and I can't do the things I used to."

There it was, out in the open at least in my mind.  He is not 19 anymore nor 10 foot tall and bullet proof.  He admitted it.
I think it can be very difficult to face the fact that your life is not as it once was.


Dr. Feris discussed Palliative Care for Rich and he actually considered it. Palliative Care is not Hospice but is defined as special medical for people with serious illnesses.  It involves working with a special medical team that focuses on providing the patients with some relief from symptoms and stress from serious illness. The goal is to improve the quality of life for both the patient and the family of the patient.

I asked Rich on the ride home why he was always very negative when people asked how he was.  He didn't really have much of an answer.  I'm of the belief that if you always say you are not well, you will be unwell.

As for the Uh-Ohhh?  It is there and for the moment I am going to cope with it in the only manner I can.  Hope for the best, prepare for the worst, and don't freak out.  No knowledge is more fearful than having knowledge.

I know it is weighing heavily on Rich's mind.  But he told Dr. Feris yesterday that he didn't care, he was not afraid of it after all he has gone through.
We can all put on brave fronts in front of other people can we not?

7 Weeks Out and Lymphedma of the throat

Things were really cruising along and Rich was feeling much better day by day. He did things like mowing pastures, mowing the yard, working on the Jeep, doing chores ... his energy nearly seemed boundless.

7 weeks out we hit a sudden snag.  Miss Peggy came out, but the doctors had given him a bit of grief for losing weight.  He told them that it had been so hot and humid that he didn't feel much like eating.

Then yesterday, after I got home from a 'graveyard' shift, he told me he was not just feeling quite up to par.  I helped with chores and then fell to sleep.

He has lymphedma~~
"Head and neck lymphedema occurs when the body is unable to transport fluid due to damage to the lymphatic system. It happens when scarring from a surgery blocks lymphatic vessels in the neck or the lymphatic system is damaged by radiation therapy."

It started creeping in slowly and has come to what I'd consider full force right now.  So far it hasn't impeded his speech or swallowing, but I do notice that he is trying to clear his throat more often.
I'm sure that his lymph nodes around his neck were damaged with radiation, another little thing that we didn't know might happen.

I'm going to look into the massage technique of moving the fluid out of below his chin.

On a second note, work has tossed me into the fray of things.  Since my first day back after 3 weeks off, I have worked 40 hrs a week and the shifts are all over the place.  I took the time happily because Rich was doing so well.

Now that I believe that Rich is feeling crappy and not eating well, it is time to put my foot down at work and tell them that I need to be taking more time to take care of my husband.

Cancer taught me that being with my husband and having quality time together is more important than most anything else.

Of course Rich is looking forward to having our 10 year old Grand daughter come for a week's visit from Wausau.  He bought a fishing license, so he can take her fishing.  He is going to teach her how to ride Fred our fantastic old mule.
He plans on taking her for rides on the 4 wheeler.  And just spending some one on one time with her.
Lily was very distraught over Rich's cancer diagnosis and this should help both her and Rich feel better.