The Whirlwind of Retirement

 

Little Did I Know

It's hard to know what you don't know. I certainly did not know what David would be doing in retirement for real. In the lead-up to it, there was much discussion about all the things he might want to do. He'd dream out loud about it and try to feel what it would feel like. Many folks told him he'd be bored. Many folks told him it'd be great. Many folks said many things about their own experiences and gave their own perception of what retirement is to them, and we listened closely to each and everyone. We learned it's a process:  There's the getting ready to retire, then the actual retirement, and then the doing of the retirement things. For David, he apparently had - and still has - an ongoing list of things he desires to do swirling in his head at all times. It all started with mowing every inch of the 6 1/2 acres of our land. Then weed-eating most every stitch around the fencing and promptly spraying weed killer at the base line of the fencing like real ranches apparently do. There's still some more of this weed-eating business left to do, but let's give that a little more time.

Then, Phase 1 of the garage clean out has officially been completed. There's likely several more phases to this process. Having Phase 1 of the garage cleanout completed is like completing your first 5K race as you train for your first marathon. It's a big deal.

In between various clean-outs, mowing and other misc projects - because he's got like 4-6 other side gigs around the farm going on simultaneously - he's also fishing in our pond.

Catfish RoundUp

This particular pastime is two fold: Pleasure and Purpose. He enjoys fishing no doubt. Yet, the pond has catfish growing at a faster rate than expected. 

I imagine there's more of these in our pond,
which we stocked just a year ago now.
They've really grown.

Once David started catching some of the larger catfish, he begin doing the things to them that gets them ready for a fish fry. I don't like to ask about that, watch or be heavily involved in that process, but it's happening and I'm good with not knowing the details. I understand that we can't have an overabundance of catfish in the pond. It's kind of like my chickens. I eat chicken, just not my own (and never have an overabundance of chickens on the farm). I eat catfish, but do I eat my own? I'm still contemplating this situation. I'm a catch and release kind of girl.

Let's see, oh yeah, retirement. I got off track there a minute. So there's yard and pasture work, garage cleaning, wood working things happening and fence mending, there's Tuesday Floor Day in the house (I hate cleaning the floors), and just the general upkeep of all the things anyway. There's never a lack of things to do, that's for sure. But are they things he wants to do? The answer is that he'll do the things he wants to do. That's the answer. And something he wants to do (that I didn't know he wanted to do) is power spray wash the inside of the barn - and the garage. Barn first, he says. 

So in order to do this, we must take down all the signs in the barn (which David had hand-made a few years back 💛) which then gives him another thing he wants to do which is refurb each of the signs. Fluff them, I'll call it. Fresh paint, a little changeup on some of the signs. But this is his thing. He made these signs for the barn awhile back and is now giving them a fresh look and will rehang them after he sprays out the inside of the barn. After all, there's also electrical outlets to cover, chickens to displace while they are trying to lay their daily eggs, and straw and pine pellets to rake up before this spray business actually starts. 

Cleaned and ready to go back up in the barn

The mardi gras rooster, freshly painted

My girls! Hope and Dora on display 💟

First things first. We cleaned one area/wall of the barn of all it's things nearby it (coop, sign, etc) and it's ready for his inaugural power wash. I'd long ago put the thought of this job off as long as possible because I can only imagine the amount of water INSIDE the barn once we start this process. Luckily, it's still super hot outside and it'll dry. David and I had originally agreed on doing this the upcoming weekend, but since he's retired, he is happy to start without me and whenever he wants because he can. He uses the reason "it's a test run" and then what he does is actually start the project. I'm at work when some of this mayham happens, and will quickly get included as soon as I get home, but nonetheless this barn clean-out is happening. It's long needed it. I know that when the power washing is complete inside the barn I will wonder 1) how I ever allowed an animal to live in such a dirty barn, 2) how I ever thought the barn was acceptable in the first place, 3) how will I ever keep it that clean. The inside walls will be a totally different color than they are now because currently the inside walls have a light coat of 'dusty brown' distributed perfectly thanks to the wind and fans inside the barn. This is a In Progress situation, so I'll keep you posted on what kind of ding-dongery mess this turns into. 

I think this is about enough of 'retirement talk' as I think you get the idea of what's happening in David's newfangled retirement. It's organized chaos. The starting of 247 projects and finishing 2. There's more, my friends, but this is Level 1 of his idea of retirement. And who knows how many levels there will be, but hang on for this ride. I'm strapped into this roller-coaster and can't get off. Thank goodness I get to go to work. All this mishmash makes running across Tennessee look easy, folks. 

BESREMi gone wrong

Little did I know is right. Little did I know what was about to happen as I made my way to Texas Oncology for my 3rd injection. It was just last Tuesday (because I go there every other Tuesday for my injection). I arrived to Texas Oncology and had my labs drawn as usual, and directed to the Infusion Room to have a seat and wait for the results. On this day, I sat with 2 other patients/ladies who were waiting for injections - although different injections for different reasons. The nurses in the Infusion Room were all busy, and we were told their computer system was "having issues" so that was slowing them down. We wait. We continue to wait. While we wait, we chat and learn about one another. This is when I am reminded how magical my life is. The challenges that other patient's face, the life issues they have, and the details people are willing to give so freely can be daunting. Yet, we are all in this cancer facility for a reason: to be treated for our cancer. And we wait together. 

My lab results are eventually given to me and my oncologist is advised of them. He then sends the dosage recommended for my BESREMi in the computer system as he usually does (which will be 200 mcg this time) in order for the nurse to see it in the computer, as well as the to the pharmacist who will get the medication ready. The train seems to be slowly moving now. Yet, I wait as their computer issues continue. Then, finally I see the nurse is given the box of BESREMi by the pharmacist and she walks over to where I have been waiting in my seat with the others. She asked me to lift my shirt and will be giving me the injection in my abdomen and asks which side. We decide on the opposite side than the last time. This is the same nurse that gave me my last injection although in a private room. I'm fine with having the injection in the open room, that's not an issue for me at all. She seemed in a hurry, but they kind of always do.

As the nurse literally rips opens the brand new box (breaking the tape seal on the box) with the medication inside, she finds a prefilled syringe and quickly proceeds to inject my tummy. It happens so fast that I'm thinking many things: 1) the medication inside this box is a prefilled syringe of 500 mcg of BESREMi, 2) I'm to only get 200 mcg not 500 mcg, 3) the nurse never looks at the syringe.

As she begins to inject, I say to her that I'm only to get a portion of that syringe and what she's giving seems too much. The nurse replies (as she continues to inject the medication) that it just seems like more because she's injecting it slowly. Then, she finishes injecting, and reaches over to show me the Rx label the Pharmacist has placed on the box of BESREMi that says 200 mcg/0.4 ml, saying to me, "See, the label says it's 200 mcg". 

I generally never question the people who give
me injections in my life (flu, covid, etc).
But I knew something was wrong this time.

I know immediately that she's given me 500 mcg as that's what was inside the (unopened) actual box despite what the new Rx label that the Pharmacist has typed up and stuck to the box says that she's attempting to show me.

It was all spelled out, but things went wrong despite that.
This is how medical errors happen. People are not paying
attention to the details. 

THEN she saw it: 200 mcg per 0.4 ml. She was supposed to give me 0.4 ml and not a full 1 ml. She was not to give me the whole syringe of medication. Instead of giving me my dose of 200 mcg (0.4 ml) she just injected me with the whole syringe of 500 mcg (1 ml). I have been overdosed. 

Once she realizes what she's done, she's frozen. She says aloud, "I just gave you too much" and says she must go tell my oncologist. And she's gone.

I wait. And all I can think of is 'she just killed me'. This is way too much medication. And if she didn't just kill me, I'm going to be really sick tomorrow. After all, two weeks ago I had 150 mcg and I was sick with flu-like symptoms as the packaging says can happen. Now, I've been injected with 500 mcg. This is not going to be good.

The nurse appears again and says that my oncologist thinks "because the syringe has 500 mcg 'preloaded' that likely there are patients that get this dose and I may be sick for a few days" but there's no getting the medication out of me at this point. I'm then informed that I can go home, but if I start having any unusual symptoms that I should seek help.

Okay, I'm thinking to myself: I received 100 mcg the first injection. I received 150 mcg the second injection. I was supposed to receive 200 mcg this time and instead was given 500 mcg. Now I'm being sent home. 

I walk to the car in shock and try to feel if I'm feeling okay. I think I'm okay. I start to drive home and get a text from David asking me if I'm okay because I've been at the Texas Oncology awhile. I text back and tell him I'm not okay and then call him. I replay the whole scenario back to him. I can see all the issues and mistakes as I tell him the situation. The order for 200 mcg from the doctor. The Pharmacist taking the box of BESREMi 500 mcg out of the fridge and putting a label on the unopened box for "200 mcg/0.4 ml" knowing that there's 500 mcg/1 ml in the unopened box. Giving this to the nurse who then thinks I am to get the amount inside the box and does not look at the label closely, and when she looks at the label she misses the need to only give me a portion of the syringe. It was all a recipe for disaster. The irony in this is that this is the SAME nurse who gave me my last injection and did indeed realize at that time (last time) that I am not to get the whole amount that's in the syringe, yet this time, had forgotten all of that, even at my prompting. And the nurse would later tell me that it was the Pharmacist job to 'shoot out' the amount I was not supposed to get and only leave in the syringe what I was to get. 

My head spinning from uncertainty, I pull over on my drive home and contact MD Anderson. I send an urgent message in the portal with my lab results and with the overdose amount I was given, explaining what had happened and attempting to ask them what I should do. I then proceed to finish my drive back home and anxiously await a reply back from them. 

I get home and sit at the kitchen table. I vow not to move from this kitchen chair and will stay here all night (awake) waiting for whatever is about to happen. David sits across the kitchen table from me, staring. He's trying to put all the pieces of this puzzle together. We both are. 

Fast forward to the following day and that I did eventually go to bed. I did go to sleep. I did get sick and had a fever, headache, body aches and felt bad - for almost a week. I did not verbalize how bad I was feeling, as I think I was just trying to get through it. Also because it wasn't til I started to feel better that I realized how bad I did feel after all. Luckily, the day after the injection, my nurse manager gave me the day off work which was a blessing, so I did have one day to rest.

So what happened next

Turns out, the nurse who had given me the injection at Texas Oncology did call and check on me the following day. She said she had worried about me all evening and not slept that night. She, too, might have been sitting at her kitchen table staring at the wall wondering what was going to happen. She scheduled me to come in for labs on Friday "so that we can take a look before the weekend" at what the extra medication might be doing to my body - and if any action would need to be taken. I also sent my oncologist at Texas Oncology a message through my patient portal saying from here on out, I'd like to give myself the injection, explaining that on the BESREMi website that most patients do this themselves and it's considered the most reliable and convenient option for patients. Yes, let's do that please, I'm thinking. (Just for the record, I had asked not only my oncologist, but also the nurse, to be able to self-inject - twice - at my previous visits and was turned down. I doubt I'll be turned down from here on out). 

MD Anderson also sent me a message through my patient portal advising me to seek assistance at the hospital if I had anything unusual begins happening with my body. I'm not really sure what that means, but okay. I was also informed that I would likely feel sick, meaning flu-like symptoms, that occur after an injection. They did recommend that I skip my next injection, which I completely agree with. They said there's nothing to do but wait and see, which actually made me feel better knowing that they, of all people, would be able to tell me if there was anything to tell me. But they had nothing to truly tell me, so that meant I would live. After all, I couldn't die because my last blog post was about death and dying and the irony of me dying after I wrote about dying would seem like I might have know I was going to die when in fact I had no idea that I would be dying at the hands of those trying to help me. 

I was able to see my lab results in my patient portal from Texas Oncology and yes, my numbers did change, in fact, they fell which is what this treatment is supposed to do - but at a slower rate of course. The numbers I'm speaking specifically about are those that the injection dosage are based on: 1) red blood cells, 2) white blood cells and 3) platelets. While the good news is that this overdose now quickly placed me into a category of having my every-2-week-dosage placed to a "set" dosage, it also threw my white blood cells "low" which places me at risk for infection(s). Most all blood cancer patients are considered immunocompromised (did you notice that on your covid booster form previously, back when we had to sign a form) but having my white blood cells so low is not optimal. Nonetheless, from here on out, if my numbers can sit within a certain range, my dosage will be the same every 2 weeks and will be used as maintenance doses, which after a year of stability, the injection will be every 4 weeks. Leave it to me to go from treatment of 100 mcg, to 150 mcg and then straight to 500 mcg. Let's just dump those numbers low real quick, shall we. 

Ultimately, a slow increase of this medication is the intention to strategically get my red and white blood cells along with my platelets to an optional position. Instead, we just blew that whole system out of the water and sunk those numbers real quick. So the remaining question now is what will my next dose be? Once stabilization is met, the goal is to keep the dose at the last dose given. So who knows what and when the next dose will be indicated. I will say this, I'll be real curious to see what my oncologist at Texas Oncology says when I see him on Tuesday. Real curious. 

The reality of it all

What I've realized is that the reality is real for me. The reality of the mistakes that are made in a cancer center's Infusion Room where people are already sick enough. What other mistakes are being made? We are human, mistakes will happen. Yet, what kind of quality control initiatives are being taken? And even though I may not know the answers to these questions, is someone able to tell me that this is being watched and action is being taken somehow? I'm left with decisions to make such as do I remain there as a patient? Do I have the Rx sent to me and self inject based on lab results? Is this a sign to only receive my cancer care from MD Anderson? The issue is that my cancer treatment is already set up and approved through Texas Oncology along with my insurance already, and then factor in that my health insurance is changing in Oct and then changing again in Jan - and Texas Oncology has already made arrangements for such. It would be difficult to find a new PV provider because it's a rare blood cancer and I've found thus far, the only folks that are really in-the-know about it seems to be MDA. 

I can pretend to know what will happen next, matter of fact, I almost typed in what I thought would happen. But I'm not in control here. I'm just not. The insurance companies are, the oncologists who make the decisions are, and here I am trying to fight for my own desires and life. It's a pickle, my friends. I want it all to be straight forward and easy - but it's just not. No matter how I try to shape it, twist it and turn it where I might think it needs to go, that's not the way this works. I am on a rollercoaster, a different rollercoaster this time, strapped in, with a blood cancer that gets to decide for me. And then I juggle "the system" of doctors, facilities, medications and lab draws to determine the destiny of my life. I'm not in control of anything, I just pretend to be so I feel better. Luckily, David and I will travel to Houston to MD Anderson in Oct to see our respective oncologist and there, Dr V is my guiding star for all things polycythemia vera. He's the best control I have in all of this. 

Hope is always there

I'm happy to report that my sweet Hope is responding to the supplements/medication provided to me by Dr DePaolo. You probably remember I had hair analysis testing completed, results given, and medication/supplement given for Hope to have every morning and evening. Hope's skin condition has improved greatly, and her hair is growing back. I will say she has pop-up places still, and may likely have that always. But thus far, her large skin lesions are decreasing and wow, she looks great! 

Sweet thing

I'm still working on lunging her which she is receptive to, and have begun to place a saddle (I've just bought) on her because there might be a time in her life that I could place a small child upon her back and walk her around. I'll start with one of the small dogs on top of the saddle because David has always said something about this place being a dog and pony show. Turns out, it is.

So how is Brooks these days

I had the great fortune of having Lauren and Brooks out this past weekend to the farm for a couple of days.

These two.

There is never enough time to do all the things we want to do. There's just too much to do - and not enough time. We tried though. We tried hard as we fed the animals, petted the animals, filled up water buckets, played in his little swimming pool, using the slide to slide into it. We ran and ran around the yard as it turns out running is one of his favorite activities too. 

We even fed the cows next door

It was a water kind of weekend.

The animals all love the attention of Brooks, but besides Buddy, it's Paul who loves him second. 

Not to worry, Paul was with us the whole weekend.

It’s a bit entertaining to watch as Paul The Turkey (caught on our Ring) follows us each and every time we pass by the front of the house. It goes like this: Brooks is running (usually after Buddy), Nana is following closely, and Paul is not far behind just trying to keep up. 

https://ring.com/share/8604f2c4-1fdf-42ff-93bd-ce4bc9b9e45b

and again.....

https://ring.com/share/22752b4d-5234-4d65-a533-5d7205204c83

We had so much fun and as Brooks turns 2 years old next month, he loves the simple things like a janky little swimming pool in the front yard, drinking from the water hose and listening for the trains to go by and then running down the gravel road real quick to get a peek through the trees at the traveling train passing by. We notice every airplane high in the sky and all the birds that are in the trees singing their song. He hears and sees all the things we let pass by. I was, like he is, a child for the weekend. 

Yes, as usual, I cried when he left because I always do. When you have children, it's hard to believe they will ever have children of their own. And if/when they do, I'm here to tell you ahead of time, it's magical. 

How's the business going

Great! It's been since March of 2020 that I've been placing fresh eggs out for sale. The egg business is booming and I'm still selling a dozen eggs for $2.50 like it's 1999. Having an "unattended" road side stand (fridge, that is) is like offering people to come up and do stupid things.

Like take all the green eggs out of every egg carton and put all the brown eggs together and take just the brown eggs, leaving a carton of all green eggs just sitting there in the fridge. 

Someone does not care for the green eggs and left
them all together for another customer 

Like placing the Sold Out sign upside down for funzies

Okay then

Like moving the shelves in the fridge around, or paying in all nickels. Or like taking all the money in the 'change box' or unplugging the fridge. People are people and this is all part of the deal. On the flip side, people also leave me egg cartons to reuse. They leave me nice notes. They pay what they can for the eggs and know they can take them if they need them. Life is not easy for everyone and sometimes a dozen eggs can make a difference in a life. I love doing this for many reasons, but my favorite reason is for the community to have access to fresh eggs - either free or at a great price - whatever serves them. My chickens are happy to serve the community and so am I. 

Love you to the barn and back

Recently, we had Dr Bing out on a farm call to the farm for all 4 livestock guard dogs vaccinations, heartworm test and yearly heartworm shot (so I don't have to remember to give them a monthly heartworm chew). 

I just love this Vet - even though he rarely speaks.

Dora watched as Dr Bing made a farm visit to the 
4 livestock guard dogs, Penny, Dutch, Levi and Whisper

Dr Bing is like a man out of the wild wild west. A man of few words. He started in the laundry room with Levi and Whisper who now spend much of their time in retirement mode which is a very different retirement mode than David’s. 

Whisper enjoys the peace and quiet of the back
closet in the laundry room

Levi is more for taking up space
in front of the dryer.

Then it was off to the barn for Penny and Dutch's turn. All 4 dogs are heart worm negative, and received their yearly heart worm prevention shot, which makes my life easy. Winston, as you know, is heart worm positive and is not treatable in the vet's opinion. He's too old they say. Dr Bing just shakes his head when he sees Winston and says, "That dog is old." Little does Dr Bing know he's right at home here at the Senior Sunshine Resort.  

It's always fun having the vet come for a farm visit. Usually things go sideways, but that day, it all went perfectly and only cost us a small fortune but worth every dime. Because who says penny anymore. 

In closing

I'm thrilled to be feeling better, thrilled to have had Brooks over this weekend, excited about the inside walls of the barn being power washed, happy that David is doing the things he'd like to do, and grateful for my job and the ability to work. I'm thankful that all the animals are doing so well, and that fall is on its way. We have another party at the farm coming up in October with several birthdays to celebrate. There will be chicks as gifts, a chicken cake, and lots of fun to be had with family and friends. And maybe even a cleaner barn. No matter though, David and I are fascinated with each day we are given. Another day to enjoy this beautiful life. I think I'll go saddle up Hope and pet some chickens. 

Nobody can beat you at being you, stay true to you,

Cyndi