How the cluck are you

 I didn't come this far to only come this far

As we close Blood Cancer Awareness month, I am reminded that most everyone I come into contact with, including myself, were/are not aware of polycythemia vera. I've lived a whole almost-57 years and never heard of it. I went to nursing school, and still, nothing. And here I am living it. It's truly a lived experience for me, learning as I go and making my way through the initial stages of a diagnosis of PV. As cancer touches most every one of our lives in some way, shape or form, I've also noticed how cancer muscles in on all aspects of our lives. It creeps in and makes itself at home, affecting each person differently. We each get to determine how we now want to view our lives, how we wish to live our lives with cancer, and most definitely for me nurtured the positivity in my own life. 

Myeloproliferative Neoplasm is not a common term, nor well understood even by those who are diagnosed with it. I wade through Facebook support groups, doctor appts and conversations with others like I'm talking about a piece of rock I recently found while on Mars. It's just not very relatable. MPN is in the bone marrow and blood so it's not recognizable upon seeing someone who has it. It's very well hidden, as are the symptoms. If I never spoke of my symptoms, most would never know I have any. In the book I listened to recently, The Traveler's Gift, one of the places the main character travels back in time to see is Anne Frank. In the book, this man's conversation with Anne Frank was trying to understand how she and her family live life in hiding- and what it's like. Anne Frank told this man, the key is to not complain. The take away was this: Choosing not to complain: It's a mindset, a choice that's made, a conscious decision to not complain. That was Anne Frank. In all the difficulty, hardships and trials of her (and many other's) life, Anne choose not to complain. That was inspiring beyond words. How did this young women, in such a difficult situation choose to not complain. Her mental strength, her courage and wisdom was beyond her young years. And still today, she's teaching others. I'm proud to carry her name, as my own middle name. I, too, want to be an Anne Frank.  

MPN's are not something I expect anyone "to get" or understand. As I, myself, am still navigating these waters and imagine I will be for some time. My understanding is if you start to get a handle on it, the progression of PV keeps change as a constant (treatment, symptoms, etc). I've seen a handful of webinar's on MPN/PV and it's mind boggling the research that still needs to be done. Having a rare blood cancer does not lend itself to a lot of research money being used on it, as there's just not enough awareness of it and not a large population of people who have it (compared to most cancers). 

One thing I know for sure is my own experience with it. Looking back, I can see my lab work over the last year reflected PV. My hematologist oncologist saw this train coming as well. There were discussions and evaluations. Hind sight is 20/20, and now I see all the signs that were pointing towards PV Road. Interestingly, it's when a doctor officially stamps it as such, that it gets real, real fast. Then and only then did I start riding the PV train. First stop? The reality hits. Second stop? So many questions. Third stop? Start treatments. Fourth stop? Deciding how I want to live my life now. Why should it be different, one might ask. I mean, I'm terminal anyway, as we all are. My expiration date just moved up a little, that's all. But that reality for me changes my lens from which I see, and I now see things brighter and clearer. I'm grateful for each and every day in a new way that I wasn't before. I don't feel the need to complain. I feel the need to live.

Recently, Lauren emailed me and asked me how I was doing. My response was: 

My first MPN Awareness Day, along with my first Blood Cancer awareness month has been a eye-opener. It helps make everything "more real". It always seems like others have these things going on - not me (us). Then, a record scratch noise happens and the realization of it all comes barreling in. How am I feeling? Elated that there's information out there and I have access to it. Sad because it's happening. Happy because I have great health care. Frustrated because my body feels different sometimes. Grateful for this gift of cancer to teach me many lessons in life. Shocked because it actually takes awhile to truly settle in. Content because I know what I have now. Unsure because I have many questions unanswered. Satisfied, as I feel happy in the life I am privileged to lead. 

There's every emotion pouring through my body. Mostly, gratitude. I've moved past the initial sticker shock and bought the car. Now, I'm driving it. Where am I going? Not even I know. But my hematologist oncologist told me one thing before I left his office one day: Go live your life. Thank you, Doctor, I think I will. Sound advice. 

I will see my hematologist again tomorrow for a monthly lab check - and talk to the doctor on this particular visit. If my numbers reflect the need, another phlebotomy will be completed. It will be my third one (if needed), and thus far has not been an issue to have one. It's very similar to giving blood at a blood bank, except it's a life-saving tool for the patient rather than the receiver. It's all so interesting. I have so much more to learn in regards to this thing called PV. 

Symptoms of PV, which I'll address on
another blog one day, and which ones I have.

 

So I've been living life out here

This feisty girl is enjoying herself. I'm cycling/biking to work a couple of times a week. As Tabitha  Brown says, I can because it's my business. I run, I walk, I farm, I Go, Man, Go. I'm not looking behind me, but ahead. I don't want to argue about something old. I don't want to argue at all. I want to smile, have a dance party in the barn and be with my family. I have a new attitude about my job, and immense gratitude for it. I enjoy answering the phone as a Triage Nurse "How can I help you today?". What a privilege. I'm about to be a new grandma and picked out my grandma name (Nana). Little Brooks will be all over this blog with my chickens, horses, donkeys, goats, dogs, cats and sheep. Just living my little life. 

Brooks is her pumpkin right now.

You left out ducks though

I did. It's with heavy hearts that we made the decision to share our ducks with a kind and quirky couple from Ivanhoe (out by Bonham). They too have a pond. They now have 12 ducks, 11 white and 1 black. I now have peace of mind when I lay my head down on my pillow (new Zoey pillow, but the way) that Marley and Lucy are not having one for a snack. It was awful having one of your animals get another one of your animals. Something had to give. But I have to tell you something else. Ever since we re-homed our Duck Dozen, ALL the other bird wildlife that was visiting the farm's pond has disappeared. No egrets or cow birds. Our ducks were their welcome sign, and now that's gone. The only thing on Duck Island is lots of turtles sunning. Weird how bird life is. Maybe the wild birds will return. I certainly learned something new about that situation. And I also know that quirky couple probably feels that we are equally quirky. We are. Love that.

Fo Shrizzle My Frizzle

After a new purchase of an iPhone (thank you, pond incident #2) I have some photos to share of my new Frizzles. Close your eyes and imagine this: A chicken who stuck its little toe in an electric socket and lived to tell about it. That's what a Frizzle chicken looks like. I now have 6 of them (Thank you, Chicken Lady, Colleen in Van Alstyne). After our barter session, she has 13 silkie chicks and I have 6 Frizzles. 

3 white and 3 black, all without
names right now.

They look like they need a good brushing,
but no.

Trickery

Once upon a time, a farmer thought it would be a good idea to get his ducks off the pond using a rope. He asked the lady farmer to hold one side of the rope, and he'd hold the other side of the rope, and together they would stand across the pond from each other and drag the rope along the top of the water to scare the ducks off the pond. This idea was genius until the rope was actually too short and someone ended up in the pond. Luckily, the ducks were scared off the pond, and corralled to a corner of the pasture and shuffled into a crate strategically placed there in hopes this rope trick would work. As the farmer was screaming, "don't let the ducks get by you!" and each farmer was pushing them into the crate.....one duck got by the farmer and back into the pond. 11 ducks in a crate and 1 in the pond again. Not The End.

Let's just say that 2 things got away in that Pond Incident. An iPhone in the pocket of the lady farmer and one duck. The story continues......

Once upon the next day, a farmer got in his kayak and asked his lady farmer to carry a net onshore. After the farmer diligently paddled for 1 hour in circles chasing a duck on the water til it was tired, the lady farmer caught the duck on land in the net. Finally, The End after this last duck was caught, and after a visit to the AT&T Store.

How the farmers looked afterwards....

Right-sizing feels right

Stay with me now. I've learned there's grief in transitions, even when they are good. There are a few on the horizon. I don't exactly know what's driving this, but it feels like my intuition is. So I'm going to go with it. I find it hard to even type this actually, but the truth of the matter is: The Sheriff was right. 

There, it's out there. The Sheriff's rule of no goats or roosters rule is going to stand. Now, how this all shakes out is going down this week. I need a little more time to iron out the details, but will get back to you very soon with the deets. Stay tuned.....

If anybody needs me, I'll be keeping it down while you're trying to sleep,

Cyndi