Almost 20 days out from Prolia

Well here we are nearly three weeks from the injection of Prolia aka denosumab. I am still alive and kicking! 

Let's call it so far, so good. During our frigid spell last week, my hands hurt, I got a slight headache, and I had a shoulder ache. So all my interior alarms went off thinking I was in for some issues.

Truth is, none of it was an issue. I did as the nurse told me to do, took a Tylenol and drank lots of water. The thing is, none of the aches and short lived pains may have been from the medication side effects.

By later in the day I felt my normal self whatever that may be. As long as I could get outside [which I did in the frigid temps] and move around I felt much better. Moving makes me feel calm and takes my mind off from most things.

I spent hours with the VA Website trying to get my husband's email account [similar to an account used by health care centers] upgraded to their new and improved and super duper secure sign in change over.

Let's just say that if I were an aged disabled veteran with both memory issues AND PTSD, anxiety, and depression, the computer would have been thrown through a window and promptly beaten to a gazillion pieces.

I finally got through most of it and came to the very last step. The site asked for a phone number that is in hubby's name. So I put in our land line which has belonged to hubby since 1996. The same phone number that the VA uses to contact us.

The message came back to me: Phone number incorrect or not found. After 3 tries I got another message. 
You will receive a code to finish this set up via USPS in 5 to 10 days. Please return and use this code to confirm your identity.

I had other things to take care of that day, but shut my laptop down and walked away from it.

I had enough.

However, I feel good and am encouraged with each day regarding this new medication for Osteoporosis.

Now on to the next step. Getting Hubby ready for his grandson spending the weekend and his daughter and her hubby showing up for a visit. 

One day at a time. I hope your weekend is quiet.

We are getting a Winter Storm.

Prolia (denosumab) Injection

 So yesterday was my first jab of denosumab aka Prolia.

The weather for the drive to LaCrosse was shiite. Not bad like a snow storm, but by the time I got into the city of LaCrosse, the roads were slick as a whistle. When I pulled into a left hand turn lane ... ALL the ABS's went off and my 'Ru slid in protest and stopped.

It was one of those moments where you cuss under your breath and hope that no one else behind you does the same thing and whacks you in the rear end. The wait for Valet parking was long. Long enough for me to pull out of line drive around and then pick another parking area to use.

I walked back to the Clinic and Hospital and noted from that the time it took me to park far off and walk back ... none of the people waiting for the Valet had been taken care of yet. Well, that's a mid Monday morning for you!

I think the Valet staff was probably out spreading salt on the walk ways. 

That is all beside the whole point of going in to get the 'jab'.

I was nervous as all get out, let's just say that. When a nurse named Kayla called my name I stood up and followed her.
She had the most gracious smile. She looked so young which reminded me that on the outside, I looked like an elderly lady [Hubby says Lady is not the correct word...he prefers Wild Old One].

She had me sit in the chair and then she started to go over why I was getting denosumab...she quipped that Prolia was so easier to say. She said I could have the shot in the tummy or the back of the arm. 

I picked the back of the arm. She also said that we'd go over the list of things I needed to know after the jab so she could make sure I did not have an allergic reaction. Hey, and the shot didn't hurt! I did not cry, stomp my feet or even try to run from the room!

As she started going over the list and what to do...I commented that I'd read so many BAD things about Prolia but also heard good things from another person [Thanks Boud!].

I know that people trash-talk medications online don't necessarily represent the overall consensus of reality. So I asked her about all the terrible stuff I'd read on the 'net'.

Kayla's smile was so comforting as was her attitude. 

"I generally receive very few calls on this medication." 

We chatted about other things while I waited the allotted time. This nurse made my morning. 

So. What to watch out for? This medication may lower your resistance to fighting infections -- so for the first few months -- well, that is obvious. Since my husband is health compromised we don't allow anyone with colds to visit. There can be low back pain, muscle pain, joint pain, stuffy nose...the list isn't too long or terrible, but Kayla asked me to call if these things felt overwhelming.

So how is it going so far?

Nothing. The jab site doesn't hurt. I don't feel any different and my attitude is very positive right now.

Kayla assured me that there are ways to combat issues that could show up but also assured me that most of the time there weren't problems. Most of her patients tolerated this treatment well.

Comment on my paperwork: 
Age related Osteoporosis without current pathological fracture

The drive home was unremarkable. 

Again, I will say...if this was a medication that I needed to stay alive. I probably wouldn't hesitate. And in a sense, this is a medication that I'll need to stay active and upright. 

Would it be different if it was a diabetes medication that kept me from becoming comatose?

All choices are personal. Let's see how this one plays out.

I will continue to do Legend's CrossFit which is a toned down exercise program twice a week at my local gym and continue with hiking like I normally do. 

Get in the mood...or not.

  Oh sometimes I get in a mood. Certainly being stuck indoors does that to me. 

Introspection is like taking an x-ray
of your emotions,
thoughts,
and behaviors.

~

After all, being stuck inside makes me cranky. So I start thinking. How did I get to this point? Am I a good person? Am I happy? Am I...

Well, you get the idea. So much has shaped me [just as it does others] over the years.

Then I look in the mirror and realize that I am not the same person on the outside that I feel like on the inside. I feel no different than when I was much younger. My soul is the same, the package it is harbored in has changed.

Why do people see the outside and never the inside?

Why do we have to be so strong when we feel so exhausted.

Heavy thoughts for a grey day.

Next week is my first shot of Prolia which could become a lifetime commitment. Some of the pros and cons go like this...

Lifetime of shots every six months. 

The bones are like an organ. The spine holds the rest of me up. The bones support my organs. Without my bones I would be helpless. So the decision is to try and save my bones just as I would try to save my heart or any other vital organ.

The cons are there too. In the form of side effects. I'm going to think positive. IF I get along with the Prolia, quitting is not an option after a year or so. If one quits, the incidents of spinal compression fractures increase exponentially. The other choice was to try an infusion of the cocktails of meds that already led me to great pains.

That would have been once a year. Followed by IV steroids to combat the painful side effects. [yeah...um, no! Needles and IV stuff? Oh yuck!]

This all is going to occur right at the holiday time. 

Since I am having a moody few days, I may as well say it. The things I miss most are the family get togethers that are done this time of year. I do feel lonely. I don't have the option of just going to visit my kids and grands. [They all live at least 4 hours away]

My step family does ignore us during the Holidays. We became nonexistent once I stated that driving 2 1/2 hours one way to have dinner and visit then drive back home at the end of the day was no longer an option. 

Imagine having to haul all the oxygen equipment and medications. [and at that time, hauling my MIL who could barely walk and soaked her diapers if sitting too long] 

So I fight sad thoughts during the Holidays with a cheery smile and hide behind that smile. 

Not all days are like that. I do find relief in my own ways as long as I can get out into the woods.

Credit to Charlie Mackesy: The Boy, The Mole, The Fox, The Horse

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. 

I want a PITY Party.

 

So, after a short vacation for some free time which...WAS awesome and wonderful...and a weekend visit from a granddaughter, I was left with the Sunday afternoon blues.

I'd had a great weekend with my son, his wife, and Rory. Someone else saw to the meals and checked in with hubby. The animals had enough hay and water to cover them for the time I was gone.

For the 36 hours I was in Kenosha, I didn't worry about making sure someone took their pills on time, if he got to the bathroom on time, or what did I have to make for breakfast, lunch, supper. I had back up for that.

Then, this past weekend I'd been treated to a girls' day out by my granddaughter, good sensible conversations about books, dragons, life, and all that normal stuff.

These were things that made me feel alive and normal. I had human interaction and lots of laughter. I remembered what life was like 8 years ago. Before one medical issue after another happened.

I would be lying if I said that at this point I am pleased about always being the person in charge.

Granted, my husband is not difficult and he is rather pleasant. The man who used to fix things, get things done, and be fun and engaging is gone.

In his place is a man child of sorts. There are very few things he will or can do for himself.

Now he sits at the table and stares out the window. Sometimes he has something to say but most of the time he struggles with words so it is easier to be silent.

He refuses to wear his hearing aids, so conversations can be pretty bizarre especially when his aphasia perks up.

"Bagels are trying to get in the scrins with those flies. Better shut the door."

Translation: Bugs and flies are on the screens, shut window.

I feel guilty for being grumpy and irritable when he spills on himself and the floor.

He asks me several times a day what we are having for lunch or supper. I tell him over and over. Sometimes I just purse my lips and tell him to think about it.

And then I feel like crap because he can't recall what he was told.

On other subjects he seems sharp as a tack. 

It makes day to day communication otherworldly.

The interesting part of all of this is...

Maybe the time off and fun visits make me realize what I am missing. 

I am jealous of those who have freedom to travel and the freedom to have friendships and a social life. I'm tired of turning down all the invites to friend's houses for evening campfires and get togethers...and other events. It is tiring to explain over and over why I can't just pick up and go.

Then the invites stop. And there it is. The thing in my life. Really, some don't want to hear my struggles and I don't blame them. So I don't talk about it. 

I know he is better off here at home than anywhere else. Yet once again I feel the discomfort of wishing things were not this way. Some days I'm just so tired of being the responsible adult.

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.

What next?

It's no secret that COPD is a taker and a taker. Pictured is hubby taking his afternoon Nebulizer. He'd be angry at me for grabbing a shot through the stairs, but it is what it is.

COPD is pretty unforgiving. It takes everything from a person  and if there are other health issues, it makes it all the harder. [Generally there are always co-health issues to go along with severe COPD]

Most mornings he gets up and comes in the kitchen for coffee. I take his 02 readings right away. When he takes his CPAP off and gets dressed his 02 drops to the low 80's. Anything below 92% is dangerous. He has a hard head and won't hook himself up to his concentrator.

Below 92%, your brain starts to malfunction, as well as all of your organs. 

Then...we found a lump in his neck.

They did an ultrasound and then it was recommended that a needle biopsy be done. That needle biopsy turned up 'not enough' cells and samples to make a diagnosis.

Rich was against the ultra sound, I convinced him to do it. He was against the biopsy and he was not happy but did it.

Now the lump has swelled. It causes him no pain or difficulty in swallowing or breathing. But he is not a happy camper. He told me if we'd just left the d...ned thing alone he'd have been happy. 

The doctors recommend a removal of the 'nodule' and then send it for testing and he emphatically said....

NO.

I can't blame him, he has gone through so much in the past 8 years that it seems cruel to put him through anything more. 

In fact he is becoming more at peace with his future. Even as far as to make sure that I have what I need when he is no longer here. Odd to be making plans like that, but we are at that point. We actually set things up 12 years ago. That was 4 years before he was diagnosed with throat cancer.

The nodule could be benign but he doesn't even want to address that. 

So we meet each day as normally as we can and I take care of him and everything on the farm. Once he is done with the farm we will move off from it. Oh, I'd love to stay here in these beautiful hills forever but that won't be practical at all.

The fact is, he wants to stay here until he dies and then he wishes me to move on to live in a place where I don't have so much work to do. Our place was remodeled and it IS a solid low maintenance home. However, the remote location will make things like getting groceries, medical care, and help much harder as I age.

We've decided that I should move to an area where I have access to public transit and the ability to have groceries delivered if I needed that done. Location, location, location. Since I [we] have no relatives living in this area, I will move closer to my son. 

One of my new and younger neighbors has voiced her desire for me to stay. She said she would watch over me. In truth, I am not sure I'd want her to. She is now learning to deal with her own parents who are aging. She can't care for her parents, work full time, and raise her children...and then take on someone like me.

The plain truth of it all is that I am tired of being the adult all of the time. I once asked his daughter to give me relief. Her answer was no because she had to make sure her husband had his lunch packed for him daily.

Her children come to visit more often than she does. My grand daughter asked me last weekend if I didn't think it would be smart to leave the farm after Grandpa was gone. I would be too alone out here.

My son had voiced the very same thing. So had my other grand daughter who had come to visit a few weeks ago. 

What next? We actually have set a plan in motion. Well, at least an option.

Hubby and I agree, when he is gone, I will move back to the town where my oldest son lives. 

What Is Anticipatory Grief?

 Anticipatory Grief is something that can begin before the person you know has died. 

I realize now that the last nine years of my life I've assumed the role of a Caregiver. The first diagnosis of Stage IV throat cancer changed our lives. [Whoever has had cancer in a loved one or family member will know that the C word changes things forever] 

The event started a cascade of other health events that compounded on Rich's COPD. 

Now we live day to day with a routine of me doing the simple things for my husband that he cannot do. My routine has changed and his care is at the forefront of each of my days. 

At first I was frustrated and a bit angry because I never thought that I'd have to learn to do all the 'man' stuff that was always done by him. Over the years, I've taken on all of the duties around our small farm and it can be very taxing. 

Finally I've come to the realization nine years later, that I've gone nowhere and done nothing but give give and give more. Yes, it is common to feel that way as a Giver. It is also common for a Giver to feel guilty at those very same thoughts.

There are days I look outside and see myself on a camping trip I've longed for, or perhaps a Waterfalling trip...exploring the parks that my state has to offer. Wandering along wooded paths and exploring without a time clock. Reality bites and I am doing my next Giver thing. 

I'm luckier than some Givers. I can still get out for daily walks and sometimes fit in a nice hike at a park close by. 

But I daily grieve for the person I used to be married to. The energetic and sometimes pain in the butt guy. We did a lot of weekend traveling together to see other friends. We camped with our mules and rode parks. 

He fixed tires, maintained the mowers, tractors, skid steer, and did all the farm jobs. He was a force to be reckoned with.

Givers learn things. I learned to drive the skid steer, arrange for maintenance on them, fix fences and reroute them when the deer take them down or trees fall on them. I used to really go after it with gusto. But I'm growing tired of all of my extra duties.

The point is. Daily some small part of me grieves for the person I used to be married to. The one that gave out hugs all of the time. The one who was independent and vibrant. Not the person who sits quietly and stares out the window. I ask him, "What are you thinking?"  He blinks and finally looks at me and replies, "Don't know. Nothing."

I like to have a plan. I'm always thinking about the 'what if' scenario. Apparently, that is not the healthiest thing to do. However, that is the way my brain functions. 

IF this happens, what is my next step? 

Each day, I see a little less of the person I married. He moves slowly away as if he is fading. He is fading. 

Each day I grieve a bit more for the person I am losing. I know I am putting forth my best efforts but I can't change what is happening inside his body and brain. Some days I am angry that this happened and think IT is NOT fair! And then there is the guilt for thinking that terrible thought.

There is no cure for his diseases but a release of pain and suffering when the time does come.

And then I will grieve again. Not just for him, but for me who after years is suddenly out of a job. 

What will I do?

Will I feel whole or half?