Rare Disease Day

 

On this last day of February, we celebrate Rare Disease Day 

There’s certainly a day for everything, amiright. This particular day is intended to bring awareness to the many rare conditions that exist in this world. David and I happen to represent SNUC and polycythemia vera (MPN), respectively. I’ll give a quick review of each. First up, the ever not-so-famous SNUC:

Lovely, means chemo and radiation ☢️ 

Next up, PV:

And there we have it! Fellow PV-er’s and myself may not know the progression for our own particular case, but lab values and symptoms let us know. 

People will ask, what exactly is that anyway 

I’m always happy to explain what PV is, and that in 2005 is was classified as a blood cancer when scientists discovered the JAK 2 gene mutation and this was indeed a cancerous process. Blood cancers can be confusing and misunderstood. Heck, I’d never even heard of PV before they gave me my diagnosis. I was like what the what?!

There’s so much more to be discovered about PV and SNUC and the gajillion other rare diseases in this world. Some with fewer than a mere few hundred people having it (Hello, SNUC, I’m talking to you. In 1986, there were less than 300 people known with it). It makes it hard to find reliable and positive treatment, as well as support for it. That’s why we picked MDA for David’s treatment. They see it more often than most places do. There’s just not enough research for these rare cancers and diseases to allow them the grant and research money like the biggies (breast cancer, lung cancer among others). But at the same time, with significantly less people having it, it seems fitting the research and money goes to those cancers afflicting the most people. Makes sense. But without a cure yet, PV patients are left with treatment options only. Luckily, yes, it’s a slower progression than most cancers. While SNUC is an aggressive fast growing one. David and I are balancing each other out over here. We know the future is unknown. It could be long or short, it could be easy or hard. But life is that way despite cancer. Everybody’s got something. And no one gets to pick their destiny. We accept it and live life to its fullest. God willing, and we will live the story that is written for us. We are grateful for each and every day. 

So how’s the big man on campus 

He’s been better. He’s hanging on for the recovery ride. He feels bad, is fatigued and realizing this recovery process may be as long as the treatment was. No matter, he took a video to share what all is need when your radiated from the neck up:

Currently, he tends to feel light-headed and "just a bit off". He's not feeling his best, to say the least, but that's expected. He has very little appetite, and oddly enough, his newest favorite past time is to watch Cooking With Sonny on Instagram who also calls his show, TheDudeCanCook on YouTube. Without smell and taste, it's almost as if he's on food strike, and he's in a trance watching this guys cooking show. “Hey, Cyndi!", David will say, "Watch him cook this!" And then we do, and David smiles and stares longingly at the video as if he's trying to will his taste and smell back. I mean, David wore himself out yesterday cooking some bbq and making some of his homemade bbq sauce. I think it might have brought him a little peace to do that, I'm not sure though. This whole situation is complicated in the way it unfolds. I can't quite put my finger on it yet, except to say that at the apartment in Houston he was very "watched" by doctors and lab values. Now, he and I are on our own to go it alone. It's kind of like when you have a baby in the hospital and everything is great. Then they send you home to do it all on your own. Yeah, like that. 

He'll get there. It's going to take some time. The side effects are still showing up from the treatments, and now he has no facial hair, which is the exact face every middle aged (and older) women desires. Smooth with no chin hairs. And the hair on the back of his head/neck is slowing melting away. Things just continue to happen. 

What I meant to say each time I blog is one of the things that bothers David the most is his inguinal hernia. He's had it quite a while now, and it just gets worse all the time. The oncologists say he cannot have surgery yet - unless it's an emergency. I hope it doesn't come to that, but after David's checkup in April/May at MDA, he's hoping they will clear him for surgery for the hernia. The main issue is intubation. His mouth and throat's tissue is too delicate at this point and puts him at risk for an intubation injury. It'll wait......for now. 

My Little Pony

They're back! Sweet Dora, Hope and Faith are settling back in. Wow, do they ever need to be groomed. I can't wait to get my hands on them and get them all brushed out and up to snuff. Dora has lost most of  her hair around her neck, as she was rubbing it on a fence or something where she was boarded. Not sure what that was all about. But I’ll get her all fixed back up. 

So glad your back home! 💕

Hope and Faith were separated while being boarded because quite frankly, they had never been weaned from each other. Being a mom and daughter duo, and years later, they have never been apart. I suppose it was overdue. 

Welcome Home, Girls! We have some grooming to do 

So they were kept apart for the duration of their stay while boarded, and their reunion was when they were brought back to us. I was ALL smiles when I got them back, and there was lots of information I received.

Missed this cutie

It was also recommended that Dora be kept in a separate area from Hope and Faith, so although only separated by a fence, we are giving Dora time to settle in and heal, as well. All three mini's can stand next to each other, but there's a fence between Dora. We were told Faith was being unkind to Dora, and with Dora being an older lady, she needs a little space away from young and fiesty Faith. These young kids these days.

All three of my babies were running and playing, saying how happy they were to be home. So glad you’re back!

All In All

The first weekend home was a success. David spent a fair amount of time resting and sleeping, which is good. When he got rambunctious to cook bbq or generally over do things on Saturday, he sure felt it. Therefore, Sunday was spent in bed for him. I, on the other hand, went over to Fort Worth to be with Brooks while Lauren and Ryan ran some errands and took care of some things they were needing to do.

Sunday Sleep Trance

Brooks and I hung out and played, had a bottle, napped and changed diapers. It's a cycle to be repeated and enjoyed. Because eventually, there's going to be many more moving parts to taking care of him. Walking and talking aren't always what they are cracked up to be, so I'll enjoy this little cycle for now. He's a bundle of joy and loves to be loved. Perfect, that's what I like to do, too. 

Farm Charm

The little voices in my head keep telling me to get more chickens.

How could I not

I know, I know, I have Carlos with the girlz for this business. But no one is broody, and there's no little silkie chicks even in the works. What happened was when I happened to go up to the feed store for hay and feed, I noticed they had 3 little silkie chicks left for sale. Yep, you guessed it. I bought'em. 

Cupcake 

I also want to mention another change around here is that Frankie's last little grown-up baby we have left crowed this weekend. It was a weak cock-a-doodle-doo, but it was real. Turns out Snow White is really Prince Charming. 

Ooops

Yep, that happened. So, there's officially 2 roosters in the Little Girl Area now. I don't really know what I'm doing over here now. We've never had 2 roosters on the farm. I suppose we'll be having some baby chicks again, which is something I said I wasn't going to do again, and hence why we gave Post Malone to a friend (to breed). I have a feeling there's going to be some baby chicks later this Spring. 

I'm also happy to report all the chickens are doing well, as are the donkeys, Winston, Levi and Whisper. The sheep you ask? Well, we may be leaving them where they are for now, as I need to work out my guarding situation for them. They have to have Security at all times, as they are tasty treats for coyotes. For now, all five ewes are doing wonderful at their new location in Anna. I'll keep you posted. 

That's all I got, my friends. I'm happy to report nothing too exciting and nothing too crazy going on which is exactly how we like it right now. It's time to decompress, and welcome Spring on in. 

Have the most wonderful Monday,

Cyndi

No more counting of days, wait, are you sure?

 

How odd it feels to stop counting. We made it to Day 45 and then the counting stopped. We have arrived home to our safe and comfortable home. Now what?

David is reversing the need to check MyChart for his appointment(s) of the day or week. He's realizing that the only thing he really needs to do it eat and heal. More eating. More healing.

As we take a few days to settle in, please know this: we are processing what just happened. We are going to get the farm settled back to a more "usual"state. We are going to just "be", esp this weekend. We will attempt to listen to our knowing, and go from there. 

I'm wishing everyone a calm and relaxing weekend, and look forward to meeting you back here Sunday night. It's hard for me to write things like, "let's see what the weekend will bring" because I'm so busy being in this very moment I'm in right now. Writing. Looking across the table at David. Just being. 

Yet, the wonderful weekend will come, as time waits for no one. And we will dive into it with curiosity and wonderment. Let's see what will happen next. And in the meantime, we will be right here, decompressing and unwinding our mind(s) and body(s) from the last 45 days.

Much love,

C

Day 45 Finally

 

Finally

One of David’s and I’s favorite words ever: Finally. What a grand time to use this magical word. 

Finally, he has seen this through. Radiation ☢️ treatment #30 is in the books. 

He rang that bell in his own way, just like Rickey Henderson did things his own way after stealing 3rd base in 1991 to set the new world record (939 times, my friend) for base stealing. 

Love 3rd base in his hands ❤️

Thanks for not tearing the bell off the wall
So proud over here 👏👏👏

No, David did not rip the bell off the wall and throw it in the dug out. No, his mom was not there to run out on the field and hug him. But instead of that grand fanfare (much deserved if I might say) David had something else. The bell ringing today symbolized a chance at life. A new beginning. But if he could have pulled that bell off the wall, he would have, and taken it all the way back to Gunter to hang up there and ring it every day. Instead, it remains intact so that others will ring it to represent the fight which continues with mankind’s attempt to beat cancer at its game. Some win, some lose. But we all fight like hell, giving it our best shot. And that you did, David! You gave it your all, you laid it all out there on the line, and just as Rickey Henderson did - you're breaking barriers to show others how it’s done. So proud to be here with you for this crazy ride. Let’s go home, my sweets, it’s now time for you to sleep in your own bed and heal. 

The last strand

Over the last week or so, David has noticed that chemo and its sidekick, radiation decided to give him a new hair do. On his head, and even on his face, his hands and arms. Those areas are smooth like a baby’s behind. Yes, he’s definitely putting special oncology lotion on (thanks Kim and Brooke!) and it makes his skin very soft and smooth. There’s patchy areas on his face that no longer have whiskers and/or hair. Bright side? Less to shave. If your stand behind him in line at the grocery store, it happens to look like the barber had unsteady hands while trimming up his neck line in the back. That or made a fancy design back there, all without David even really knowing. But the effects of radiation and chemo are continual, so it’s always a surprise to see what happens next. Oh, we can hardly wait. 

Fly in the ointment 

The fly in the ointment for David is the absence of his smell and taste. He can no longer get a whiff of well, anything. Nor tell the difference between sweet and salty. They warned him about this, but when it happens to you (and also happened to my own dad, as well) food is about as attractive to David as a man in jorts is to women. 

His mouth is about as dry as a Christmas tree in February, and he’s just tired all the time. The tissue carnation which hangs out of his nose sometimes turns into a bouquet (i.e. both nostrils). He has to keep his nose so moist it drips unforgivingly, and he goes through tissues as if they fall from the sky like rain. The used versions are strewn across the apartment like we’re now decorating with them. 

Although half his weight, I can beat him at any eating/drinking game right now, like Smoothie Pong or How Many Crackers Can You Eat in a Minute or maybe even a Hot Dog eating contest and I don’t even eat hot dogs. He’s mad at food right now, and his greatest fear is his taste and smell won’t return. It hurts my heart watching his face when he eats. Whomp whomp. 

Consider yourself warned 

All this fussing about side effects are my way of documenting this journey, and when we look back on it, we'll remember these fun and silly moments we've had. We'll laugh about the tissue bouquets sticking out of his nose or his uncertainty of what is running out his nose at any given time. We'll look back and wonder how we kept up with his pharmacy, and how he drove himself to most all his appts to keep the normalcy feeling going. MDA tells you all these things can happen, there's no surprises here. Yet, it's still a surprise when it happens to you. The mind is a wonderful thing that can push away the idea that something is really going to happen......until it does. Maybe it's like swimming in DeNile. Whatever the case, it's been a progression of growing and learning. We are not one for self pity, and prefer humor instead. David calls it as he sees it, and STILL when asked how he's doing, answers, "I'm doing good, thanks". Ugh. That's all I get it is, I'm good. Still 45 days later. He's good. I'm definitely not complaining, just surprised. We both have been surprised often here in Houston. And in answering the survey questions we get from MDA, we have not felt sad and it asks that over and over. Yes, we are still doing things. There was never one question that asked us if we were "surprised". Nope, not one. I suppose that's expected and normal. 

Even though I want to dance around and smile all day today, David's outlook is much different. It's not as much of a celebration to him. It is to me and you, as the Support Crew is waving their pom poms in the air like they just don't care. Yet, David's minds eye does not see this as we do. Since I'm not in his shoes, I'm not the right person to explain it completely. All I can say is that this appears to be a moment of finality for him. Kind of like when you work really hard at painting the outside of your house, all by yourself, and you're exhausted. It's been worth it, and you've invested a lot of time into a big project all on your own. And when you're done you step back and gloat over the outcome, have a tall glass of iced tea and reflect. That's what I see David doing. Reflecting. I'm celebrating. His recipe for Day 45 is a heaping cup of reflection with a sprinkle of celebration and a dash of relief. 

MDA Rocks

As David left to go for his final treatment, and I to pack up the apartment, I know he'll be saying Goodbye to some of his most favorite people he's met along the way here in Houston and MDA. Danna, Khanh, Ashley, Swandolyn, Maria, Lacinda, Connie and so many more. You know how when you're tired and your emotions are fragile, you tend to cry more. That will be David telling his people Bye For Now. It's going to be rewarding yet tough. He's got his thank you cards written, his gift cards ready to give out (Nikos Nikos, Dr P!) and his sun-shiny face smiling and ready to tell people what they meant to him. I can't be there today, as no family inside all willy-nilly increasing the exposure to covid, but I'm there in spirit. I've had the opportunity to meet these wonderful people, and I would be hugging their necks if only I could. Thank you, I would tell them, for taking such damn good care of my husband - and every one else they make feel extra special every single day. I thank you. Keep doing what you do, keep being you, and know that you make a difference in peoples lives every day. And Danna, you'll get you a donkey one day. I just know you will.

Nothing better than a donkey donk couple 

Come so far

Yet, so far to go. The one thing I failed to mention was this morning, on this last day of his radiation he gets out of bed, steps out of the bedroom and into the kitchen where I'm having coffee. He's holding his arms and hands in the air, chest out walking as if he just passed through the finish line of a marathon race - and he won. I giggled watching him in his own little world with a private celebration in his head. His smile said it all. Although reflection was a big part of his morning, there was a release of this excited energy he wanted to let loose. 

He felt teary, happy, sad, elated, exhausted and 101 other emotions all at the same time. He's going through all the radiation and chemo because his body, in the ultimate betrayal, is trying to kill him. But one thing's for sure, David does not go down without a fight. He's called me leather and salt for a long time now, and back at cha. Turns out, he's leather and salt, not letting cancer treatment get the best of him. He tough, he's salty but his superpower is his stubbornness. What others have been a witness to and considered this trait not always in anyone's best interest is actually David's best tool in his Skills Toolbox. Cancer bounces off of stubborn. The Big C knocks him down, and he's back up in the ring again, fighting. Cancer treatment takes David's stubbornness to a new level. He was absolutely determined to not get a feeding tube. I mean, how do you get bbq through that tiny tube anyway. He was determined to drive himself to his treatments and choose a wheelchair on only 1 day out of 45. Even Dr Rosenthal, his radiation oncologist told David today how amazing he has done during these last 7 weeks. Dr R would release him to go back home, and informed him he will need follow ups every 2 months for a year. Then every 3 months for the next year, then every 4 months for the next year. And then they would talk after that. 

The Get Away

I literally did not want to pack the truck up until I got word from David that he's released. Once he arrived back to the apartment, I had most things packed and stacked in the living room. We dared not put anything in the truck until we knew for sure. Now we knew for sure. The excitement was uncontainable, but yet exhausting for David. He finally gets to go home 💕

With the truck packed, The Littles in their spot for their new normal of traveling back and forth for 5 hours, and David riding shotgun - we pulled out of our assigned spot #169 in The Greenbriar Park apartments. I took a mental picture of this moment. 45 days in the life is not all that long. But 45 days in the life with cancer treatment is eternity. I'm so proud of him and how he has handled this adventure. We are now leaving cancer island, and speeding down I45 back to a renewed outlook on life with new ideas and thoughts. We just don't know if cancer is following behind us - or not - and that weighs heavy on David. But not heavy enough to stop him from being the happiest guy in the world at this moment. He will never be the same, and I'm loving this new version of David 2.0. Determined to live life now, and the idea of living forever has vanished. I can tell you from my experience with my own cancer that it teaches me to see life through a shinier and brighter lens. And now that David and I both see through this lens, it's truly a bonding experience. We both got the same memo : Enjoy life today. Today was italicized and in bold.  

Farm Sweet Farm

We arrived back to Gunter late, hence why the blog is happening so late tonight on this 45th day. I wanted to be in every moment today. David finished his cancer treatment marathon and won. We are blessed to now know what this is all about -the nitty gritty details of radiation and chemo. How many times have you heard people tell you they went through this. I know, too many. But it's the details that are left out. Yes, it's a very private experience, and at the same time it's an experience to be shared and celebrated. Almost like looking behind the curtain in the Wizard of Oz. What happens back there? We all have a bird's eye view of what it's about now. Or at least what it looked like for us. Everyone has their own experience and attitudes about cancer treatment. We will look back on it with mixed emotions, but the primary one that is a mainstay is gratitude. We thank you, God, for seeing us through this. We are grateful for this experience. We are thankful for all the lessons that cancer teaches. It provides clarity in our life, and immense empathy for those who also visit cancer island. 

FINALLY

Day 45 has been magical. David has never been happier to be home than I saw him today. He's now turned his attention to his recovery and self indulgence, as he should. It's time to do things. ALL the things you want to do. Let's do that, and more.....

And to you, our friends and family, it's time to breathe a sigh of relief that the torture has ceased. We exited cancer island and although we are well aware that at Hotel Carcinoma, you can check out anytime you'd like, but you can never leave - that's okay, we be over here livin it up, y'all. Livin it up. 

Time to get back to farming,

C

Day 44 Next to last

 

We go together 

Our kind of togetherness

It was David’s and I’s pleasure to once again go into MDA together. It was a mini-celebration as 1) we were able to walk through the doors of MDA together, 2) David had his next-to-last radiation treatment, 3) I for my follow up appt with Dr V in regards to my PV, and have labs drawn, and 4) David and I’s appointments were aligned such that we were able to eat lunch together in the cafeteria inside MDA. It really is these small moments that mean so much to us. We both are grateful for all the doctors and staff at MDA.

cafeteria time

David had his radiation on the 1st floor at the same time I had my labs drawn on the 8th floor. We finished up with our respective appts, and enjoyed sharing a lunch together. We were both thrilled that he now has 1 radiation treatment left tomorrow! He will also have a follow- up appt with his radiation oncologist and a nutritionist call (to review his nutrition well being). 

After lunch, I went back up to the 8th floor for my appt with the blood cancer and MPN (myeloproliferative neoplasm) specialist, Dr Verstovsek (Dr V). There I would receive the lab results from pre-lunch. 

And as the good news train moves down the track, I am told my numbers are staying steady and no treatment is needed today. Even though I am “severely” iron deficient, that’s the optimal goal for polycythemia vera patients, as it discourages the bone marrow from creating more blood, hence eliminating the need for blood-letting (phlebotomies). And even though my platelets are high, it’s part of the gig, too. Overall, I’m what they consider “stable” right now, and happen to be one happy girl. My next check will be next month, but this time, back with my hematologist oncologist in McKinney, Dr Athar. 

Time to skeedaddle 

As the Tuesday night sky dims and the stars come out to play, we scurry around like little mice in the house, gathering up our things. If all goes well tomorrow, we will be dismissed from school. To celebrate, we head out to dinner at a (new to us) fav Mexican food restaurant. I eat, while I watch David push his food around on his plate. He tried bites of literally everything. Nope, nope and nope. Flan? Surprisingly, another nope. Back home we go to the apartment. 

The celebration was nice, and although apprehensive about the fact of whether or not he’ll be released tomorrow (I give it a 86% chance) because if for any reason they want him to stay, we don’t want to get our hopes up all the way. Just most of the way. 

Either way, we are about 99% sure it’s his last radiation, as he’s been told that. But just in case, we are awaiting the stamp of approval from Dr Rosenthal tomorrow - and then we know we may go. 

It’ll take us not-that-long to pack up the truck and get on the road towards Dallas. If David is up to it. If they say we may really go. We are ready! 

Nuggets from this experience 

Several things come to mind that I won’t miss:

1) It’s been a long a$$ time since I’ve had to walk my dogs on a leash for them to go potty and pick it up. I’ve been so spoiled being on the farm, and that The Littles have free range in life, like all the animals do. 

2) No more covid screening questions e.v.e.r.y day for David. No more parking passes. No more new masks ever day (although I could probably make a fortune selling used masks, if there was a market for that.)

3) The shower at the apartment. I’ll leave it at that. Let’s just say I could go all week and not shower, and it wouldn’t bother me. And probably not David either as he can’t smell me.

What will I miss? 

1) The food in Houston like Nikos Nikos and Tiny Boxwoods (thank you, Dr P and Danielle) was amazing. We didn’t eat out a lot, but when we did - it was yummmmmy. Uber Eats brought us food (thank you, Dr Waheed)

2) The warm climate - even in winter. Well, except for that one week......

3) MDA staff. They are first class, without a doubt. 

4) Sharing this experience with David. It was one of a kind. And although not an optimal thing to have to go through, the blessings were plentiful. Learning to pick my hards, feeling endless gratitude, and watching David move through this cancer treatment head-on like a Ninja blowing through the obstacle course as if it’s child’s play. #showingcancerwhoseboss

Fo Reel

As we enjoy this moment, this evening, and the memories, we reflect on the last 44 days with awe and amazement at what people can endure. Moving, life changes, cancer treatments, being away from home, away from family and friends - all show us that everything is possible with God. He carried us, no doubt. He comforted us. He saw us through. Go through = grow through. We grew spiritually, emotionally and mentally. Now, He will take us home. 

And for you, my pretty

Where do I start? Oh yeah, with......

There was no doing this - without you ALL 💛💚💙 Words cannot express how fortunate we are to have made this journey with you. ❤️ Thank you for your words, your thoughts, your presence, the cards, letters, love gifts, and care packages. The greatest gift is you - and your generosity is overwhelming. Anyone going through rough waters needs the safety and support of their lifebuoy (that’s you).

I don’t want to hurry today, because I know better. But I just can’t help thinking of what all tomorrow will bring. 

Bring it on,

Cyndi

Day 42 and Day 43 Sunday, and Monday arrives

 

Me: 

Wait, no this....

Either way, it’s seemingly intense when I blog, yet funny, it doesn’t feel like it. I rather enjoy it. 

Whirlwind

Sunday was a whirlwind day. I was lucky enough to have Lauren and Ryan bring Brooks to Gunter and drop him off to me for some Nana-Time. I got him Saturday, and had him until Sunday evening. We had such a wonderful time together, and at 4 months old, he's smiling, holding himself up, coo-ing, and being an all-around sweet, sweet baby. I think the best part was that he was all mine. He and I got to experience the farm together. 

We fed the animals each morning and night. 

Please look past the bottle burp-up as we made our
way to go and pet the donkeys

They insist on treats at all times now

We walked down and gave the donkeys some treats - who are now completely and utterly spoiled. 

He prefers to read and watch at the same time

We played, sang and danced to music and videos. 

He left grudgingly with fist in mouth

And then, it was time to give him back to mom and dad. Brooks and I stayed in a consistent cycle of bottle, play, nap, diaper, repeat. It was heaven on earth having that time with him. Just he and I in the world. 

Plumbs Up

While Brooks and I were hanging out, the plumbers came out visit us on Sunday. They got everything squared away at our house, and we were happy to see them. I'm well versed on how and where to turn the water off on our property because we've had to do it before, on several occasions. I feel like this winter storm last week really brought out the appreciation for plumbers. Much deserved.

Breaking It Down

It was also time for me to start taking apart the puzzle so many put together for us this past week at the farm. With the winds turning from the south now, the warmer weather is upon us and it's time to re-do a few things. I unplugged heat lamps, freshened the water in all heated water buckets to boiled water, and unplugged various electrical cords which the generator was sourcing. 

What I found the most fascinating was the ability for the chickens to survive this bitter freeze for days on end. 

All the single ladies

How are they able to do this, I don't know. Maybe since they are really tiny dinosaurs, they are strong and durable creatures. 

Yep, they love the cat food

My original estimate (in my head) of losing half of my flock turned out to be much, much less. We lost 5 total over the last 43 days of us being gone, and only 1 being due to the freezing cold. We had 2 hawks attacks, one natural (old age) death, and one neurological disease issue. And one of our old girls who could not withstand the cold. How these chickens stayed well day in and day out is attributable to several factors - one being the caretakers and friends. They made all the magic happen with cleaning, food and unfrozen water. Those are the exact things needed to keep a chicken alive and I thank Rosie, Angela, Paul and Anthony who ALL made grand efforts to take care of our animals. All the animals, not just the chickens. 

Get into Winston’s smile 😃 

I mean look at this happy boy. He's gained so much weight now, and smiles. 

Walmart greeter of the Graves farm

Yes, he smiles and is completely content to live out his senior life here at The Sunshine Senior Resort for dogs. He's our first official senior "stray" resident, and after his wonderful example of a stray's will to survive, he inspires me to live life in our older age with grace and hospitality. He welcomes everyone to the farm with open paws. 

Another area thriving happens to be the garden, snow and all.....

The broccoli looks a little iffy, but it’s still growing 

And the little girls, they busted a move and made it through as well. Simply amazing. 

8 little ones

These little darlings enjoy the heat lamp

And as another turn of events happen, Lauren and Ryan decide they too will pursue chickens in the backyard at their house in Fort Worth. After checking ordinances, they are cleared for takeoff. Who knew this chicken lady would have her own chicken daughter. I know, weird, but weird things happen in my life more often than not. 

Top of the world

While things on the farm are looking up, and Brooks is hanging out with me, we FaceTime'd David to see what he's up to in Houston. In a wonderful turn of events, he was scheduled and able to go for his radiation treatments on Saturday and Sunday. He was thrilled that MDA was able to open its doors again, as things in Houston are still in recovery mode after last week (as they are in many places). 

It was late Sunday night that I rolled up to the Houston apartment. With the truck unpacked, I settle into a coma-of-sleep while unfortunately, David does not. Sleep does not come easy for him right now.

David is solemn and quiet, moving around the apartment as if he's in a state of zombie-ism. He's beat, he's tired, he's unable to sleep, he's this and he's that and he's more of this and that. He's everything and more MDA said he'd be. There's no getting around it. They have sucked the life from him, and he's in a perpetual state of resting, sleeping (trying), self-care, medication-taking, and attempts to eat and drink. 

After today? He has 2 more treatments. He's going to make it, but it's not going to be pretty - nor should it be. It's still our best hope that I will pour him into the car either Wed or Sat of this week, depending on what it is he wants to do - and head back home. He needs to be in his bed at home and start the actual healing process. The recovery itself will take as long, or longer, than all the treatments took. Weeks and weeks. The recovery is something that when you start this whole process - you are not thinking about. You're busy thinking about treatment. Now, he's thinking about recovery and what that will entail for him. Lots more time. 

Really, more lessons

This is where more learning happens. Treatment is almost complete and another new chapter starts. Ah, the lessons we will learn from this recovery process. We are stepping into unchartered waters once we leave cancer island. All the safety nets here are released, and he'll be back in his own boat rowing toward his "old life". But there is no old life. He's drifting right now. There's a new life waiting for him. He sees it, too. He gives pause for the uncertainty in it and new beginnings. I can see the wheels turning in his mind as we approach the ringing-of-the-bell. 

He's now able to see why people walk to ring the bell as if defeated. Because they are. His thoughts of once ringing the bell with vim and vigor have turned to resignation. He'll ring the bell because he's done, that's why. He'll ring the bell to show the others he did it - and you can too. And although he's living at the corner of Beat Down Way and Hit Me Again Street, right in the heart of MDA......

He's ready to wave the white flag and be rescued from its grip. He's ready to start making decisions other than what time his appt is today. I'd normally say something like, "One thing I know for sure is that David will ring the bell at his final radiation treatment with delight and a huge smile on his face!". But I've come to doubt myself. He may prove me wrong, and do that. But we both know why people ring the bell the way they do - with a sense of "okay, I'll ring the bell" because what's behind ringing the bell is not worth ringing a bell for. Complicated. 

Stay in your lane

This is where we try to stay in our lane and say, okay, go finish on Wed and ring that bell to announce to yourself (and others) that you did it. YOU did it. No one else is suffering physically like David (and like all the other cancer patients in treatment are). Just them. The patients endure the pain and suffering. The caregivers work hard too, but it's not the same. It's a team effort and we are all cheering from the sidelines, no doubt. That in itself has seen David through this. Connection to friends and family is key, and he's been blessed that his people, his tribe have all been there with their pom poms in the hands and their arms in the air screaming Give Me a D! D Give Me a A! A! Give Me a V! V! Give Me a I! I! Give Me a D! D! What's that spell?! Gooooooo David!

I can see David trying hard to paddle his own boat, stay in his lane, and think about what his future holds. This enables him to look inward and listen to his knowing of what's next for him. He's been spending some contemplative time lately. All this time in bed, in the quiet of his mind, thinking. What's next in his life. What does all this really mean. His whole perspective on life has shifted. This is the greatest teaching cancer has to offer. 

Somewhere over the rainbow

As we slide into the ending of this chapter, we take you all with us. We will march these last days together. You are busy rebuilding your own life after snowvid last week. You are busy living your stories and struggles. We are grateful you are here. 

I'm happy to report the farm in Gunter is doing well, and we are looking forward to the future. I can imagine David will be happy to be back home, as will the horses, and Sugar and Maybe who became the best car riders ever. 

Midnight arrivals are our thing

Everyone will be glad to see everyone on a daily basis again. We are not quite there yet, but as you can tell by now......I'm feeling it. We still have Day 44 and 45 to come, and as we all have seen, anything can happen. 

Happy Day to you all,

C

Day 42 All is Well

 

I, like we all were, spent the weekend catching up and doing things. I fully intend to blog all about it, like visiting with the plumber and keeping Brooks this weekend. Yet, as I drive back to Houston, it’ll be tomorrow before I can put pen to paper. Or rather fingers to keyboard. 

For now, I’m happy to report that David’s treatments at MDA did resume. Happy Days for everyone! 

I’ll catch up with you tomorrow,

C

Day 41 Gunter vs Houston

 

David and I are seemingly in two different worlds on this beautiful sun-shiny Saturday. I, at the farm, and he, in Houston at the apartment. Each of us doing the things to keep our lives on track - together. 

Boys first

Good news! David was able to resume his treatments today at MD Anderson. They opened back up and let the show begin - again. With 5 treatments left, he's on the downhill slide back into life. Technically, today he's now left with 4. I'll attempt to illustrate what David learned this past week, from my viewpoint, not his. 

As this past week droned on with freezing temps and snow and not much else, David's body began to attempt to heal itself. His body said, "Hey! Nobody is burning, frying or chemically altering me. I think I should try and heal now". And it started. David got a glimpse into his future self after treatment. Maybe he thought it'd be all over and he'd go home. Maybe he thought since he couldn't technically see the damage inside, that it wasn't as bad as he'd thought. Yet, his body surprised him and gave him a friendly reminder of what it's going to take to heal from 30 rounds of radiation and 6 weeks of chemo - all at the same time. 

The lining of his nose started healing and began creating layers and layers of scabbing and new tissue. Then, it wants to sloth off, and maybe sneak down the back of his throat and if he's not careful, he'll swallow it - often times enough to rival chemo with the nausea it throws at him. The blood and scabs heading down his throat into his tummy 1) makes him sick just thinking about it, and 2) the physical effects of it creates a sickly feeling in his tummy - because that stuff is not supposed to be there. He's sinus rinsing to try and get most of it out, but the rocks and gravel (as David calls it) inside his nose decides what it wants to do - when it wants to do it. David is just along for the ride. His sinus passages rule right now. They are trying hard to heal and regenerate. Now, if only this radiation zaps all the remaining micro particles in his nasal passageways which is the ultimate goal of this cancer treatment. SNUC is sneaky. It's an aggressive and reoccurring type of cancer. MDA is attempting to radiate and chemo away any remaining cancer he has, after the initial portion was surgically removed (thank you, Dr Pahlavan!). 

His throat and mouth are trying to fix hot spots and sore areas. His lymph nodes are asking to return to their regular size. His skin on his face and neck is dry and flaky from the burns from radiation, and it's slow to come back. Everything is still dry. His mouth, his colon, his eyes, his body. Goodbye taste and smell. Will he get that back, you ask? David also asked that question to the doctor and got the generic answer, "Some get it back, while others do not". Oh, okay, thanks for that. 

What I'm trying to say is that since David had a week without treatment, all the areas affected by his treatment had started to try and heal itself. That's wonderful, except that now he's started back with treatment and all that hard work his body did all week will be destroyed, and it'll get a chance to start again in another week. David was happy to catch a break and recover a few days, but his psyche just wanted him to have this all finished. And now, that train has started again. What I saw him learn this past week is just how much it's going to take for his body to heal from all this. Time, and lots of time. 

While David is in Houston back on the treatment train on cancer island, he's in count down mode more than ever. 4, 3, 2, 1 and RING!!!

Girls next

I'm all bubbly inside thinking that David will get to come back home and heal. His outlook on life will never be the same. His clock has been reset by cancer, and what we have learned is beyond what any schooling ever taught us. 

Cancer is a wonderful teacher. If you let her, she'll teach lessons you never dreamed you needed to learn. In the beginning, we were eased into some of these lessons, but it could sometimes be hard to see them. As the days go by, it became easier to become aware of the important things cancer wanted to tell us. Granted, not everyone wants to discover the lessons, but that's actually part of the lesson. Leaning into this knowing, that cancer has lessons for us that we are not expecting, is part of what we end up learning. Everything is not obvious, at first. 

There were lessons we did not receive at first, although cancer tried several times to teach them. One was, it's okay to grieve. Sometimes, we didn't think we were grieving or need to grieve. I thought I was ok. I felt ok. But you know that moment when the lights go out at bedtime, and it's just you and you there, and I felt out-of-sorts, that's when I learned what I was feeling was grief. In the quiet of the night, I felt it, and learned to allow myself to feel the heaviness of it. Prayer was my answer. Gradually, over days and weeks, the heavy feeling grew less and less. Cancer taught me that even when I think I feel okay, I may not be. And leaning into the knowing of that, helped me process it and move forward. Getting stuck in all that heaviness is no fun. 

Another lesson I've learned from cancer is that life really is short. It's not just a line we say. It's short. And when someone tells you that you have something (excuse me while I clear my throat, cancer) that will make it even shorter, then I say Live Baby Live. Live that life, you do you, do what you want to do, stay away from people who do not serve you, do only the things you want to do, and lastly, never apologize for being selfish. That's just other people not living their life and making you feel like you shouldn't either. Live Baby Live that wonderfully awesome life. 

This all brings me to the next thought pattern of what is next. We will finish this, we'll go back home to the place we love, around the people we love, doing the work we love to do, and try try try hard not to focus on whether David's cancer will come back, or did they get it all. We will wake up each day, grateful for that day, and live it well. That's our plan. 

And before we come back home, I, myself have an appt at MDA to have my labs checked and see if any treatment is in store for me. If so, it will be same day, and I'm good to go. Cancer teaches me many things, but my big takeaway from her is that I'm so much more than cancer. She can come along for the ride of my life, but you can't try and hog up all my time. I ain't got time for that. You can hitch a ride, but let's Go Man Go. Better keep up. 

Cancer is a good teacher. I can't say I like her, but I do appreciate her. I'm grateful for all she's taught me - and the many more lessons she has in store for me. I might have learned those lessons without her, but with her, I think I learned them a little better, and maybe a little faster. I still don't know how David and I got cancer, and will likely never know. I have so much for which to be grateful that leaving that question behind is something I can do.

We have all been impacted by loved ones with cancer. It's never an easy road, and we all have our own views and feelings about it. I hope you understand my heart, and even with the horrible ugliness of cancer comes an unveiling of lessons to be learned from it. If we are willing to look for the lessons. They are not always apparent, but they do have a purpose. Here's to leaning into listening - and looking for - what cancer has to teach, as I still have a lot of learning to do over here. 

Joy and more joy,

Cyndi 

Day 40 and it's Friday

 

What a week for everyone! While everyone repositions themselves in their world of the living, we are doing the same. David spends most all his time resting and trying to sleep when he's able to, with all the "rock and gravel" in his nose. I'm here in Gunter, back to work today and continuing to monitor the faucet(s) out back for evidence of thawing. I'll need to practice how to turn the water off. Although the actual thaw-out may be tomorrow's business. 

Nonetheless, we'll enjoy this Friday and keep you posted on weekend events. I hope this finds you safe, warm and boiling fresh water. 

We'll talk again soon,

Cyndi

Day 39 So close

 

We are all so close to being released from the tight grip of the Blizzard of Oz. As I drove from Houston to Gunter today, the snow all around was so white and bright, I had to put my sunglasses on - and there was no sun. My goal was to drive during the daylight hours and whoop whoop goal accomplished. I made it around 3:30 pm to Gunter, and the highway (I45) was surprisingly good, unless you exited the highway. Then, you best watch yo self. The side roads were icy and slick. Gas stations were out of gas, or they had gas, but you could not go inside, and every other scenario you could imagine. I stopped once and found gas, but no bathrooms as the Love's I stopped at was closed inside. Luckily, there was a street nearby that looked safe and deserted where I would walk Sugar and Maybe so that they could potty. I may or may not have done so myself.

Circling Back

As I document David's journey through his radiation and chemo treatments for SNUC, we have felt most every emotion one could feel. I remember being so excited about coming to MDA for this opportunity. Moving into the apartment, although temporary, was new and different. Watching MDA perform their magic is like watching an Olympic rowing team compete, as each department at MDA is in complete unison in working together to get every patient taken care of. This week doesn't count, as mother nature had her own plan, and I know MDA is doing their very best through it, as are we all.

We would say, "Oh, this isn't so bad" and have now made it all the way to "This sucks". I mean, is cancer treatment really all that great? I suppose everyone's experience is different, but with 1 week left (always subject to change) David is feeling fatigued, nauseous, has very little appetite, and his mouth, nose (sinuses) and throat are all reeling from the pounding. David's psyche is another area that is constantly challenged. This kind of thing requires an insurmountable amount of mental strength. What I can tell you is that if you ask David how he's doing, he'll tell you he's fine. He's good. He's staying All In, and seeing it through like a boss. And I'm right there with you saying, Yes, you are fine, my love.

Before I left Houston this morning, David was loaded up with his fav food/drinks which he refuses most of the time. He literally has to force himself to eat. We talked about the smoothies already, not a fan. Talk about refusing....anyway, he has the things to nourish his body and even when I'm there it's a constant issue to try and "talk him into" having something. The good news is that the Enterprise opened back up this morning and I'd made a reservation the other day online, so that worked out nicely. He has a car and can travel to MDA and any food place that might be open (which are about zero right now). 

According to his schedule, he's still slotted for radiation on Sat, Sun, M, T and W. Chemo is Tuesday. If this in fact stays like this, he'll complete it all Wednesday. I don't want to get our hopes up at this point, as Houston (like all cities) are trying to recover from this snownami. What I do know for sure is that David would love to be ringing the bell on Wed. You know me, I'll keep you posted.

Audible

Since Monday there has been no WiFi at the apartment in Houston. There has been no ability to work, watch TV or things of that nature. We do have our phones, and I can tell you Audible is my thing. I finished listening to Barack Obama read The Promised Land. I listened and completed the book, Educated by Tara Westover. I cannot even begin to explain this book, but I'll try. It's a hard read and a hard listen. It's about a family living in the mountains of Idaho, always preparing for the end of the world. It has everything from mental illness, domestic abuse, and basically about a family living in the mountains who do not believe in schooling, vaccinations, health care, medications or anything society has to offer (because that would be brainwashing - oh the irony of that). It's shocking and eye-opening, it's sad and confusing, and it's a book I won't ever forget. Esp the last sentence of the book: "You could call this selfhood many things. Transformation. Metamorphosis. Falsity. Betrayal. I call it an education". Chills, my friends. 

I finished Radical Optimism by Beatrice Bruteau. I listened to Brene Brown's podcast(s), "Unlocking Us". I really do think she's my favorite author, with a second place for Glennon Doyle. I did go back and listen to parts of Untamed again, picking my favorite parts out for emphasis, thanks Glennon. Did I mention no WiFi? 

Closed due to technical difficulties 

Home Sweet Gunter

As I drove down the gravel drive, the donkeys are in the front pasture to my left. There's hay there for them, and they are literally romping and playing, chasing each other and hee-hawing. They are so happy. I roll down the window, and I just know they know it's me. I yell to them out the window, "Hi Mama and Papa!" and they run around like a dog with the zoomies. I stop the car midway down the gravel drive and hop out. I have treats ready for them. That's my first order of business. That, and coming back down to their pasture to cut/axe out a place in the pond for them to drink from. I see where there was a small area left, and will help them get even more water. Later.

I head to the house and find Winston, Levi and Whisper waiting with tails in the air wagging. I have treats for you all too. I love on them all, and my heart is full. I check my Little Girl chicken area. Yep, still 8 there. I go into the barn and the big girl chickens are all doing great. I lost one older girl to this storm. Her name was Peaches, and we'd had her for at least 4 years and she was an adult when we got her. She could not withstand the storm. Miss you girl. 

I unload the truck, put some water on the stove to boil, I give the chickens some water and I start putting things away. Before long, it's feeding time, and off I go back out to the barn. I cannot believe how wonderful everyone is doing! They have survived Snowtorious B.I.G.

The electricity is on, the WiFi is up, everyone is happy and doing well, and it's time to investigate plumbing. I find the north facing outside faucet still frozen, and when it unthaws, I imagine I'll need to turn the water off until a plumber can come. I'll be boiling more water and showering tonight.

That's odd

There's prints of some sort all around in the back pasture. Weird. I'll need to investigate that further tomorrow. There's currently no animal of ours housed back there. Something has been marching around in this snowcano out back.

I've got more things to do around here, but for now, all else will wait until tomorrow. I hope your Thursday has been wonderful, and that you too are beginning to see the end of this Frankenstorm. 

Bring on the sun,

C

Day 38 Are you okay?

 

I keep thinking about everyone, and what your story might be during this bitter winter storm that affected so many people. Somehow, the time arrived where we just needed to have our basic needs met, right Maslow? Food, warmth, safety, water and rest. And if we had some of these needs met, we also really needed a connection with each other, to talk about this crisis - and feel loved. Some had warmth and not water. Some had only safety and food. Others had everything but electricity. Whatever your scenario is/was, I pray that you are okay and seeing your way out of the particular situation you have/had. 

Chicken In

Nice card, Sheryl ❤️

There's so many things I've been mulling over this week. So many 'What If's' and 'Is everything going to be okay?' with very few answers. 

We are forever grateful 🙌🏼

Yet our friends stepped up to the plate and went to bat for our farm animals this past week to help relieve some of those concerns. And they are coming through this very well because of you, our friends. 

Can’t wait to hug your necks!

We want to thank Gina and Ed for making sure the donkeys had hay. To Angela and Paul for their constant updates and checking in on the farm, and for all the Barn Maid Service they provide. 

Winston, Paul’s 2nd BFF (Sugar loves Paul most)

To Anthony for the generator, and getting it all set up. And to Rosie, our caretaker coming morning and night no matter what the weather was doing. My eyes are misty and I have a lump in my throat for all those who made our farm animals a priority. We know they are alive because of you guys. No words. 

Can you even believe they can live through freezing 
temps for so long?! 🙏

How's the warrior doing?

I'm pleased to say he's doing well, and as well as can be expected at this time. As soon as I typed that, I had to rethink what I typed. Forget that. He's miserable. There, that's better. He's miserable, unhappy and as he should, he's wearing his grumpy pants often. He can no longer smell or taste, and NO food or drink sounds good to him anymore. 

He's not satisfied with anything on his plate, and has tried every texture and temp available. He's nomming hard on potato soup, cream of wheat, spaghetti, and PB&J. No more meat and he's pushing away the smoothies like they were battery acid. He's never been one to like that kind of thing, and his push back on that is something I do not desire to fight. I'm over here picking my hards, and that's not one of them.

You totally got this 👊

His sinuses are now lined with scabbing, swelling and ick. He's sinus rinsing like fisherman at a stocked pond. One after the other after the other. His humidifier is non-stop, esp with the heat on and this bitter cold requires it. Luckily, we have had electricity. The water has ebb and flowed, which is why many businesses in Houston are not open. Not enough water, and many without electricity. So many traffic lights are out completely and people are blowing right through them in their cars and accidents are everywhere. It's like the apocalypse here in Houston with zombies at any open gas station clawing each others eyes out. The grocery stores all have lines to get in the ones that are open. And there's practically no businesses or fast food open around us, anyway. Whew, that was quit the rant. Let me back it up and say that David is overall doing okay, but he's not happy nor satisfied with life right now. He's not able to sleep well or for very long, and since we have not had WiFi since early Monday morning, there is no computer or TV.

Super Hero through the thick and thin of it all 💪

Is MDA open this week?

Nope. Hardly anything is open around here due to the shortage of electricity and water. The roads are good, and have been for a day or so now. But Houston, like many towns and cities, was not prepared for this week of a bitter winter storm. Therefore, MDA closed Monday and Tuesday, then said they would close Wednesday as well. It was like trying to spoon feed a baby whose not hungry. Just a little bit at a time. 

Then, we get several messages today from MDA saying they are open tomorrow (Thursday). No they're not. Wait, Friday, but later in the day. Just kidding. No, never mind that too. The screeching noises of MDA backing up was loud and confusing. When MDA settled the dust, and got their car straightened out, we would now know that they would be in fact closed Thursday and Friday this week. David was beside himself. He really does not want this to drag out, and just wants to finish. This is mental anguish for him, as he had planned on Friday being his last day. And while he was supposed to be ringing the bell in the radiation room, he'll instead be showing up Sat and Sun, then M, T and W to try and finish it all out, going into next week. I just want to say this is all tentative and dependent on what Houston can provide MDA in regards to electricity and water. The round robin may continue to fly around and where it will land is still up in the air. But that's the plan at this moment in time. Subject to change, for sure. David is busy wrapping his head around all this. This winter storm stole time from him - and everyone! This is a week that was hard to be productive in life, and most of us just tried to muttle our way through it. 

Gunter okay?

I'm happy to say that most residents of Gunter have their electricity back on. The water is there for some people, but the city is under a Boil Alert. Boil all water before you use it, until you are told otherwise. 

I'm not in Gunter right now, but I can tell you that according to the Nest and Security Camera, we do have 1) electricity, and 2) WiFi. 

My plans are to go get a rent car for David tomorrow, and he's good to go for his treatments over the weekend. I'll be driving back to Gunter to check on the house, animals, and most importantly, the plumbing. A plumber will come Sunday to fix one of the faucets we know is broke, and when the pipes defrost, I'll probably need to turn the water off to the house. What's so odd is that our Houston apartment does not have WiFi/Internet back on yet. We have electricity and water (although weak at times) we have it. So my plans are to take my work equipment back to Gunter, and if we don't get WiFi back in Houston, I may need to work from Gunter. Currently, we are living a fluid life, and will go with the flow of it all. I feel like that's what most ALL of us are doing right now. 

There's one thing I know for sure, is that our caretaker will be so glad to not come to the farm for a few days. This last week was horrendous for her, but she made all the magic happen. She needs a break. And I need to get out to the barn, restock feed, clean up and see who needs what. And love on all the animals. I can't wait!

How did the move go?

Lauren and Ryan got moved into their house just in the nick of time. They, like everyone else, have been house bound and it's given them time to unpack and settle in.

Brooks in the carrier 

We've gotten to FaceTime with Brooks almost everyday.

He has heart eyes looking at his mama 😍

And I've never seen Lauren happier than she is right now. Ryan is an awesome husband and father, and Brooks is their world. It doesn't get better than that. 

👩🏻‍🦰👶 love and miss you both 💕

Lastly

I just want to say what saved my sanity this week was the little gym at the apartment complex. It became my place to run, meditate and be with me, myself and I. It's not a popular place here, but it was my place, for sure. 

This is what saved my soul. That machine. And when the lights go out at night and it gets dark and quiet, pray is my peace. And the can of icing in the fridge. 

My very best to you all,

C