It's okay not to know...

 

...what to say.

No one really knows the proper words to say when someone we love approaches death. It may be harder if that passing was unexpected.

It's okay to say whatever comes to your mind because that is how we humans work.

At this time, all I am is tired and wishing that I had a huge family that would come and take over for a wee bit. I'm not knocking anyone, just realizing I'm not a super nurse. 

My grandson Dennis stayed with me over the weekend and he was pretty helpful in a couple of instances. The poor young man was shook to his core by what was going on but he helped as asked.

I woke Dennis up much later and took him outside to sit on the porch. We marveled at the stars and the Milky Way. He kept commenting on how many stars he could see. I could hear the awe in his voice even though I couldn't see his face. 

It was a gift I could give him for helping so much.

In the morning, I got him up early so he could see the deer wandering through the meadow in front of the house. Then I had him watch the old oak tree so he could see the magical light in the fog .

Dennis asked me why I wasn't crying. I told him I saved it for later right now I had a very important job to get done.  That did not mean I wasn't sad. I was, but I needed to save it for a bit and hold it all together.

I needed to make sure that his Grandpa had what he wanted and needed. Plus, this was what his Grandfather wanted. 

To be home, not to be surrounded by beeping machines and nurses.

And of course, his silly little dog.

Monday morning while hubby was sleeping, I took Dennis to the  edge of the meadow where he could witness one more amazing thing that Mother Nature did.

Orb Weavers.

Thousands of them.

He was fascinated. Thankfully not fearful of an insect that gets such a bad rap. 

We watched four does walk across the back of our meadow and then went back inside for coffee.

For now, we'll see someone from Hospice each day as his meds will change with each day. There is a lot to keep straight and do for him. 

Dennis learned to appreciate what love and care really meant. He got to appreciate nature too.

As a bonus Steve stopped by to check in. While the nurse was with me, Steve and Dennis talked about fishing and hunting. Rods, Reels, Bait, Rifles, Ammo, and methods. 

I saw Dennis really take to Steve as Dennis's own father has no interest in anything of the sort.

I sort of wondered if Dennis had found a mentor and how ironic that it had been that Rich had been a mentor to Steve's son around the same age.

I nodded to myself that in the midst of chaos of an upcoming death that two people generations apart found a common ground. And I thought. This is good. This was meant to happen like this.

And I am okay with it.

Not a good start to a weekend...

This new territory of Hospice and medications is a new experience for me that I'd like to share with other folks so they can understand what to expect if they are to choose this path.

First off. Thursday night was one of 'those' nights. Rich had trouble sleeping and would wake up and sit on the edge of the bed for a hour or so at a time with his CPAP on. Sometimes he'd turn the light on and sometimes he wouldn't. 

I'd hear it and get up to check on him. He said. "I'm fine. Just can't sleep."

Finally at 3:30 he was up once more and called my name. I drug myself out of bed and answered the 'call'.

By 4 we were having coffee and as I was making a cup for myself. He suddenly called for a bucket as he was having the heaves. He had a bit of nausea that eventually passed and I made him his breakfast by 5ish.

By 6 he was ready to go back to bed, which he did for an hour and then was awake again. 

The new medication that replaced Prednisone was dexamethasone which helps him breath much better but has nausea and insomnia as some of the side effects. IF anyone is going to have side effects, it is my husband. 

A good side effect was getting his appetite back. 

That passed and by the time I made CrossFit and picked up a few things in town, I'd already put in an 8 hour day. 

Late Friday night, Charlie woke me up by standing on my chest. I told him to go back to sleep. Then ick. I heard the retching. The poor thing, poor me. By 3am Charlie finally settled down after being ill quite a few times.

This morning he is refusing to eat so I'm going to make some cooked rice for him. -- He has had water.

My other half got up complaining of a tummy ache and feeling off. Now hubby takes some pretty powerful opiods to ease the pain of breathing [I cannot imagine since it is no effort for me]. 

A side effect of these meds is...well. You know. Constipation. We have meds to counteract that side effect but once in a while when prunes and prune juice doesn't work.

Um. Other efforts must be done.

I won't go into detail. 

But let's just say that 'we worked things out'. 

We had a bit of a chuckle when we were all done. 

Now back to nursing Charlie. There are no small animal veterinarians available in our rural area on weekends. So I'll be working on him next and doing some cuddling with the little guy.

We never quite know where life is going to take us and I must say that my experiences with hubby, my MIL, FIL, and my father have proven invaluable. I've learned so much about elder care and caring.

Not a thing that happened to me this day was 'disgusting' or gross. As they say "Shit happens".

My one grand daughter was curious about these things. She said she wanted to learn about this process we call life and elder and end of life care so that it wouldn't be such a shock when she encounters it with her own folks.

She said her mom keeps getting shocked and surprised by the things she has to do for her great grandmother [96] and her mom [mostly blind]. 

Life is a process. I've had so many great years with my soul mate that I don't mind caring for him. It is a reflection of caring and love.

Sure, some days I feel it is a huge burden and I even get a bit tired of being 'on call' all of the time. I am going to call my social worker from the VA [if they still have jobs!] and set up a companionship day each week for hubby. 

It will give me a break one day a week for a few hours to go hiking and doing outdoor photography.

You all have a great weekend!

I see snow in our forecast for tomorrow after an 80 degree day yesterday!

Both patients seemed to be recovering. So now I am going to let my laundry fold itself while I get out a clean blanket and read a book until I fall asleep. Wait...does laundry fold itself???

Hubby and Charlie are snuggled in taking a nap. How sweet is that?

How it was...becoming Stoic & Help

Sorry this is sooo long! But, it has been on my mind for quite a while.

I was raised in a home where complaining was discouraged. 

My mother had a saying that many children might recognize: "If you're going to complain, I'll give you something to complain about."

I never thought of her as mean or terrible; that's just how things were. Complaining simply wasn't done.

That is, unless she complained. Then it seemed acceptable.

I quickly learned to dodge my mother's criticisms and adopted a Stoic demeanor.

A Stoic individual is characterized by strength and resilience, confronting life's challenges with reason and tranquility. They keep their emotions in check and often manage stress and hardship without complaining or seeking others' support.

Is being Stoic a beneficial trait? I'm uncertain. It was advantageous during my childhood. Not reacting to my mother's anger was more effective than panicking. Stay calm. Stay silent.

Once, I believed she punished me just to provoke tears.

It was a childish notion. I was just a kid, assuming she sought a reaction. So, I adapted. No reaction. It might have infuriated her more, but I felt victorious in some perverse way; I had outsmarted her. It was my super power.

She could strike me with a riding crop on the back of my legs, and I would stay mute. She couldn't make me cry. I was too tough and I just gave her the death stare.

I was 18 when she had her last attempt at swatting me out of unprovoked anger.
She raised a wooden spoon and I caught her arm in mid swing. I was stronger than her and perhaps an inch taller. 

I will never forget telling her quietly: "Never again. You will NOT touch me ever again." I held her arm and stared into her face. I must have had rage in my eyes that she could see. 

She dropped her arm and never tried to hit me again, though the verbal abuse ramped up.

My upbringing taught me to be self-reliant and resilient. I hardly ever engage in conflicts. When someone infuriates me, I might just offer a smile and adopt what my son labels as passive-aggressive behavior.

He might be right. I typically avoid arguments and steer clear of confrontation. Yet, in some way, I ensure I have the last nod.

My mother demonstrated the most effective form of punishment: the silent treatment. She executed it with such skill that it filled our home with tension. We tip toed around her, not sure when she would erupt. Living with her was sometimes like tiptoeing around a ticking bomb.

I often wonder if she employed these tactics as a means of survival during her childhood, or if there was something more sinister at play.

Despite it all, we sort of loved her. Dad loved her no matter what.

As I matured into adulthood, I evolved from a shy child to someone who could navigate murky waters with some confidence. I became a 4H leader and a teacher. I wanted to give other children what I never had.

My father was a man with a huge heart, a mild manner, and a great imagination, who worshipped the ground my mom walked on.

Neither parent grew up with parents that were loving and caring. My father's mother divorced in an era where you did NOT divorce. She remarried and shipped my dad to grandparents who did not know what to do with my dad.

Mom was raised by a brutal father who would lock her in the wood shed for real or imagined transgressions. Her mother was ruled and abused by her dad. 

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

So where did that leave me as an adult? The first time my heart actually throbbed with such incredible love was when I held my first son. I knew then, what love was. My husband was an abuser also, I'd married my "mom" -- he had a drinking problem and was a control freak.

The end of our marriage came in the barn one day when my 'ex' husband held me in a choke hold and told me that he could kill me and make it look like an accident. He was a Paramedic after all. I believed him. I ran away that night with the clothes on my back in an old truck. [I don't think the kids ever forgave me for that, but my survival instinct kicked in and I ran like hell.]

Jump forward 30 years. I am still stoic. 

I married a Vietnam veteran with his own issues, and somehow we two very broken people made a go of it with so much love and respect for each other. He broke through my iron heart.

But I have learned how important friends and being kind to others are. One thing I never learned [never was taught] was to do those beautiful little touches that my friends are always doing.

I get a card in the mail, I get a phone call from an old school friend. How are you? How are you coping?

How did I not learn how to be super kind and sensitive and thoughtful enough to send cards or do something unexpected to friends. I never learned those things, not those little touches that are so amazing.

I only know how to give my friendship and to jump in when someone needs something. I will drop everything to go help others.

How odd, I never learned the nuances and small touches that others have shown me. This really came to light when a very wonderful lady sent me a package this past week.

I'll write about that package and other fine things that have happened to me on the Mulewings blog.

But this morning I sat here wondering. 

And I still struggle with this idea today.

I have just found that asking for help may be the hardest thing I've ever done.

While meeting with a social worker who sat on my loveseat with Charlie in her lap wiggling around ... I asked for help.

I guess facing the realities of Hospice has shown me something I've never imagined. The kindness and thoughtfulness of humans is a real thing.

I'm not doing this alone anymore.

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.

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.

Testing, testing...

Monday morning was a stress test. Working with a person who has severe depression is and can be very frustrating.

I got him up early so I could get him to take a shower.
"I can't, I have to lay down."
This is where it gets frustrating.
I put my hands on my hips and feel the anger grow. I get a bit snarky, "So why do you need to lay down? Are you dizzy, tired, out of breath..." I take his 02 levels and they are fine.
In my mind that says it is the depression talking. He needs to move, he needs to keep moving.
So I become the bad guy. "Your 02 levels are fine, your blood pressure is good. Do you need me to get the shower chair and help you? Are you dizzy, why do you need to lay down."

I can't help myself here. I am trying to get him ready for a doctor's appointment. I tried all day yesterday to get him to shower and he was too tired. Yet he could watch the streaming on the small flat screen TV for 3 hrs.

He gets angry with me, gives me the look, and goes to lay down. I stand in the bedroom door and fume. I look at the clock, he needs to shower.

That is how the mornings go with appointments at the VA. Nudge, push, push, nudge, frustration and stress at just making the appointment on time in Madison which is 89 miles away.

The stress test came back 'abnormal'. That is all the tech would say. Cardiology called yesterday morning and scheduled an echocardiogram. I wonder how abnormal is really was if the echo is scheduled nearly a month away.

As is our normal routine when not rushing to get ready for an appointment, I left hay out for Rich to feed Bob and Thor. I reminded him that I had an appointment with the manager for his mother's apartment lease.
I contacted the attorney who will be her guardian to get some guidance and told him that I'd bring him lunch back from The Corners Restaurant.

When I returned home, he had his boots on, but was sleeping. I woke him up.
I gave him his burger and fries and then asked how feeding the donkeys went.

"I was too tired," came the answer.

I was quiet for a bit while I made copies of the POA paperwork and arranged some papers for him to sign regarding his mother's paperwork for elderly housing. The lease would not have to be signed until she had the new guardian in effect. That was a huge relief.

Finally I said, "Oh. Okay. I guess that is why they brayed when I drove in. They are hungry."
I got a nasty look and he sighed. "I better go feed them since somebody wants to play psychiatrist and tell me what to do."

I stack my copies of paperwork and shrug.
He stops at the door, "Is it hot out?"
Snarky remarks want to fly past my lips...but I press them closed and then say, "Well it isn't too bad."

He feeds the donkeys and comes in with a huge sigh. "There, don't I look cured! Don't I feel awesome? Don't I want to just run up and down and be fine? Oh look I am all better!"

Picture these words with aphasia and it actually is more drawn out and difficult. But I get the jist. He is angry at being made to move against his will. He wants to just go to bed, which he does for the rest of the afternoon.

I gather up items to go to the forest and go fencing. In my back pack I throw some toys. I won't have time for it,....but you never know.

We ... he argues with me again later after I draw out a map of how I am fencing. I tell him to get on the 4 wheeler and I'll show him.
"Quit trying to be the stupid doctor, I just need meds to make my head better. If my head is better I'll be better. Just stop it."

I let him blurt it all out and listen. I want to say to him that since he has gone out to feed the donkeys daily he has improved. He has anger which is better than two weeks ago when he had no emotion. He takes it out on me of course and I sit there and want to point out the good things that are small baby steps. He won't hear any of it.

I finally tell him that I'm going out to the garden. I leave and am there until nearly dusk.
Surprisingly he does come out of the house and onto the porch. He pulls up a chair and we are friends again as we quietly snap green beans.

Oh yes.
I did have a moment or two for some silliness.
And it makes me laugh.

Toys given to me by neighbors and other kids....
why not? We all need to smile and laugh.

Testing? He tests my patience. It is a good thing I have a LOT of it.

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.

Skin Cancer around the Eye and CT scan ordered.

I found a message on my cell phone.  It was Dr. Rahim from Oncology.  He left me a detailed message that he had ordered a CT scan of Rich's abdomen "as a precaution" and because he is detailed.

In August we'd gone to the ER because of stomach pain that was intense.  The doctors at Boscobel thought it was a blockage and did a CT scan.  The doctor who had dx'd Rich's throat cancer the August previously was there and gave us the print out of the CT. He wanted me to give it to Rich's provider and his oncologist.

I asked him what it all meant.  The lesion on the adrenal gland? The remark by the doctor who read the CT?  What was the "nonspecific sclerotic density in the right iliac bone, that should be further evaluated by a nuclear medicine bone scan?" At the time I worried when he said that could indicate the beginnings of bone cancer.

See you live in fear of someone finding something...anything once a diagnosis of cancer has been reached.  

Rich's diagnosis of having nodules of skin cancer around his eyes in several spots was alarming to me.  But he did his male stoic thing and shrugged it off.  He did say however, that the locations caused the eye doctor to be concerned enough to schedule biopsy and surgery to take them off and while they were at it, they would nip his upper eye lids which sag and block almost 30% of his vision.

He has been feeling run down the past few days and I did try to explain to him that subzero weather was hard on those who have COPD and who have had radiation treatment.  

"Where did you read that?"

"Well honey, it was actually in the audio that I took with our first meeting with the oncologists."

Sad note.  We lost Mona yesterday, our eldest hunting hound.  Good note.  I still am waking up next to Rich each day and for that I am grateful.

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.