Day 12,13,14 Home Sweet Gunter

The Good, The Bad and The Cancer

The Good

Goodness came our way in the form of a road trip back home. We set sail at about 4:30 am Saturday morning, and made great time on the way home. Although drizzling, there were not many people on the road at that time. We used our Friday night to get ready and relax, which made the weekend that much better. 

As I drove, David slept and look so peaceful. I was a little concerned we may be over-doing it a bit for him by making this trip, but he enjoyed the time home immensely, as did I. Just being in your own bed, with your own stuff brings so much comfort. Even the sounds are calming. The quiet of the farm, the tinkling of the wind chime on the front porch as the breeze gently touches them, and the occasional train (we are train people and love the rumbling - and horn - as it passes through town). It's not too loud, it's just right.

As we arrived home, we jumped out of the car and made our way towards the house, because we knew we would first need to feed the animals, as they were awaiting their breakfast. We gave our caretaker the weekend off, and are still not seeing family and friends to keep David as safe as possible from covid right now. And as we took our shoes off and put our boots on, we heard it: cock-a-doodle-doo! I almost forgot - Carlos! 

He announced his presence right away. The silkie and frizzle girlz were all around him and everyone was getting along so nicely. I can tell you that he's particularly fond of Frankie. She's an all-white silkie who hatched so many chicks for us last year. 

We have one remaining silkie chick of hers left in our possession, Snow White, who has now grown taller than her mama. 

Everyone in the Little Girl area seemed to be doing well over all, with the exception of one frizzle (which falls under the category of The Bad, see below). I cleaned out their coops, gave them treats and enjoyed seeing them so much. They are precious little chickens that are mostly fluff with a tiny body.

After we fed everyone breakfast, David went back inside the house and would remain resting for the remainder of the day in the comfort of our own bed, because his only job is Healing. I, on the other hand, would spend the day Doing Things. Mostly spending time in the barn holding and petting my chickens, loving on the dogs and giving treats to the donkeys. It was a splendid day. My barn cleanup was minimal because Angela and Paul are rocking the barn-maid service, which left me more time to do other things. I put my music on in the barn, turned it up loud, and lost track of time. #danceparty

I said Hello to Walter (yes, she's a girl) but has facial hair that makes her look like a boy, to me anyway.

Americana who lays green-blue eggs

I noticed how beautiful the leghorns are getting as they move from teenagers to pullets. 

We have two of these beauties

I admired the ombre-ness of our princess gems, Peaches and Cloud.

I watched the chickens as they (not so ) patiently waited their turn for the fav nesting place to lay their eggs. 

The chickens love that grey laying box,
not the blue one

It's not like there's not 10 other places to go lay your egg, Chikira. For some reason, they always want to be where another chicken already is, when it comes to laying their egg for the day.

Fluffy Butt is hedging her way in when Dixie was there first.

Is this really necessary

I love all 50 of my chickens, I really do. They each have distinct personalities. Some just want to be loved and held all the time, while others prefer for be admired from afar. 

Moon Pie, Poppy, and Long Neck are the friendliest and will take a pet, hug or hold anytime. 

Moon Pie is always ready for a pet

And then there's Nugget whose going to be a full-size brahma but prefers to live in the Little Girl Area. She's going to be like the Jolly Green Giant compared to the silkies and frizzles, esp when she's all grown up. I've tried on several occasions to incorporate Nugget with the Big Girl flock, but she's not having it, so back to the Little Girl Area she goes. And she's just fine with that. 

And Winston, you ask? He's doing amazingly well, and has settled into his new home with us like he's always been here. He's gained weight, and can stand up without hardly ever falling now. He has a pain pill each day for his arthritis, and his back legs are stronger now although still has trouble with his balance every now and again. We are so proud of how far he's come. He'd be "that dog" on The Dodo. You know the one, the story of a dog found on the side of the road, lives to see another day, gets healthy and lives a great life. That's Winston. Recently, he has become attached to the dog toys that Tula usually plays with. He has one in particular (duckie) that he loves, carries around with him, and sleeps with. I feel so blessed to have him. 

He's spread all his toys around yard

Yet, duckie is his favorite

There's so many good things about being home. I hopped on my road bike (on a trainer) and biked to nowhere 3 times and back. 

I also went on a run on country roads and didn't have to stop at a traffic light one time (take that, Houston). All while David was resting and healing. He gets Saturday and Sunday off from treatment, and is using his time wisely to rest and relax. We make a good team, encouraging the other to take advantage of doing the things that "fill our cup up" while at home. We had a wonderful weekend doing the things at home that brings each us of peace. Together, we were thrilled to be home, safe and comfortable. 

The Bad

Unfortunately, we have a frizzle who is either hurt or sick. It's hard to tell which one, but her right wing/leg is not acting appropriately. She's can't get around well, and is unable to get to their main food and water dish in the Little Girl Area. I don't recall her being this way last weekend. So over the weekend, I placed her in a special place inside the house with food and water so she can rest and recoup. So we had 2 recovery patients this weekend in Gunter - both who did well. 

Temporary holding place inside the house

The question is then, what do you do now? I mean, we are heading back to Houston. After doing a little research, I noticed the rental for the apartment does not say No Chickens Allowed. So Love Bug is with us, diaper on (in the car), and living on the patio of the apartment in Houston. It's a fully covered patio, surrounded by a brick wall, with concrete to walk on, that makes it easier for her to get traction with her hurt leg. 

Temporary transportation device with disposable lining

She did really well on her first road trip. We will have to wait and see how she does this week. If this is a neurological issues (which is common for chickens, see Marek's disease) there's not a good chance of survival. But if it's a physical leg or wing issue, she has a chance of healing and moving forward again. 

Sugar checking my cast work 

I have a popsicle stick and wrap on the lower leg/foot to hopefully help things. Time will give us some answers, and since I'm traveling back home the following weekend (2nd covid vaccine in Dallas) I may be able to bring her back if she's showing improvement. 

The Cancer

Each day brings new discoveries for David. Chemo and Radiation are like a scene out of a Western movie with a show-down between the two. Which treatment is the bad guy. Or should I say, who's going to win the gun fight? They are constantly duking it out, like a scene out of the Old West. Radiation did a quick draw in the gunfight on his taste and smell, as there's just a minimal amount left and as David eats, he feels the texture and temperature of the food but is finding it hard to taste or smell it. He has a hint of it left, but knows it's only a matter of time before it's gone. Chemo comes in the saloon, “Howdy Stranger, what can I get you?”, all while the twinkling of the piano keys in the background plays on. One sour stomach, please. But wait, radiation quick draws again with a sore mouth (esp roof of mouth) and extremely dry eyes that is beginning to affect his vision. Chemo fires back with a hard hit of constipation. Radiation fires back with more constipation, and shoots a round of "army sock mouth" (think stuffing a mildew-y smell-y sock in your mouth). 

Both of these outlaws are no good. They both seek revenge and retribution with a bounty of fatigue. There's no railroad or telegraph that can save David from these fugitives. They both fight rowdy and rough, all while leaving David with a long-lasting headache and a sore jaw to boot.

Tales of the Wild

David is the hero in this Western, facing head on with these characters - and all they bring. We will head into Week 3 and see what new details arise. The unknown is a scary place. We both strive to be brave when we are afraid, and strong through the struggle. 

After a restorative weekend at the farm, we are ready for what MDA and Houston will bring our way, again. We are thankful day in and day out for this opportunity. We are overwhelmed with the love from everyone and so lucky to be surrounded by and in a world with such beautiful friends and family. Although we can't see you right now, we look forward to the day when we step out of the darkness and back into the light and life we know. We see the light and know it's there, but must walk this walk as God is beside us - at times carrying us - through it all. We continue to take great care of what is in our control, and not allow what is out of our control to take away peace. 

Blessings,

Cyndi

 

Day 11 Tides turning

 

Keep Calm and Fight On

As week two of chemo and radiation quickly comes to a close tomorrow, David surprised me tonight with a question:  Should we make a trip to Gunter this weekend - together. What? As I probed to see what was behind this question I realized it was many things. But mainly, he said it would be the last weekend he could even consider taking a trip like that. He's getting pretty beat up by the cancer treatments, and they will ultimately tell him what he can and can't do. I think he feels like this is a weekend he could actually decide what he can do. The future is now. Wait, like, now? Yes, now is what we have. After his double whammy on Tuesday, then radiation the remainder of the week, he's feeling it for sure. We had a preview of what Mouth Sore HellVille here on cancer island looks like. It's not dug its deep trenches in just yet, but sending love notes of mouth ulcers and sores that come and go. The mouth rinse of baking soda is holding them off - for now. His face looks and feels like he stayed at the beach 4 days too many, without sunscreen. The special lotion helps. The bridge of his nose is sore as if accidentally knocked in the nose by an elbow at a pickup basketball game. His eyes are dry and have a sign on them stating Posted: Contacts Keep Out. The artificial tears and nightly ointment help. His tummy asks for acid reducers and anti-nausea medication constantly. And nasal rinsing now includes Johnson & Johnson baby shampoo to help provide an emollient for the thick mucus taking up residence. It also gives his sinus scabbing (from the radiation) some comfort, and also serves as a barrier by which bacteria and mucus can flow more easily. There’s fluoride to protect his teeth, and fiber and colon supplements to fight off the natural dehydration of the radiation. His number one priority is to drink, drink and drink some more. 

Power of Perspective 

What I think David is actually saying is: Pay yourself first. Because if you're not first, you're last. You've heard your financial advisor say this too many times, and you always think you need to pay others first, then yourself. Finally, Edward Jones, we are listening now. It's time to pay ourselves first and do what we can while we can. Now, it's not about money, but about time.

It's Thursday night, so we still have more time to evaluate this heading home for the weekend question. We won't be jumping too quickly on this one. I'll let you know how it pans out. 

Saying 'I'm Not Okay' - out loud

How many gagillions of times have I said 'I'm Not Okay' in my head. I was taught early on in ultra running that you keep all complaints in your head, because when you speak them is when they become real. I found that to be some of the best advise I'd received from my ultra running friends except for the usual, "Drink on the ups". And that's usually what I always did, drink my water on the climb of the hills, as that's when you're going slower anyway. Might as well use that time wisely. 

Saying 'I'm Not Okay' - out loud - was more of a challenge for me, as mental strength is what gets you to the finish line of a 100 miler, not your body. Yet now, with cancer, is that true? I've been thinking about this recently knowing that at some point David needs to be able to say I'm Not Okay - out loud. And today, he started the preface to that with "I can still do this now, so I will, because you'll be doing it for me before too long". I was so proud. That's what comes before I'm Not Okay - out loud. The changes are happening and we see them everyday. We have a little conversation each day that could be titled: What Today Looks Like. We both know it's about the side effects of cancer treatment, and how he's feeling, and what techniques we are using and what might lie ahead. Since the future seems to be now, we take the day as given and go from there. I mean, this is all so new to us that we don't know what anything else looks like, except today. 

Note to future David

If I could tell future David something, I'd tell him his success with his cancer treatments is primarily due to his insurmountable amount of mental strength that he may not know he even had. I'd tell him I was proud then, and am proud now, of all his bravery. And what I want to tell him now is it's okay to be scared. And that being scared means he's about to do something really, really brave. And lastly, that you can keep going long after you think you can't. They are all simple words that in times of strife make a huge difference in perspective. You’re beating cancer like a boss, David, and I didn't expect anything other than just that.  #soproud

Alive + Well

Life continues to swirl for us all, and outside of cancer island, I know it’s a busy place, too. I miss that kind of “busy”, because on cancer island, things like the Yoga Study continues with no yoga, only surveys asking how we are, and if we still feel like Doing Things. David and I both have a hat that says Doing Things (thank you, Lauren) so yes, we must still be doing things. I'm pretty sure we are. I will say as this journey continues, that question changes form and texture. We are doing things, but they are just different things now. Hopefully, we won't get to the point where we just flat out say No. We. Are. Not. Doing.Things. I'm inspired to not get to that point because that's the worse answer ever and I don't want to have to say that. But they keep asking it, and that means there's a reason they are asking. Ugh.

Brooks is doing things. He's in day care and convincing his caretakers to hold him while he naps instead of putting him in the crib.

He's an expert thumb sucker now, too. He loves to smile, esp at his mama and daddy. 

And Brooks is about to move to a new house in Fort Worth with his very own room. Tula will get a back yard, and Lauren and Ryan will have room to grow in every direction with bathrooms and bedrooms to enjoy. We are very excited for their new change and although not there to help move them, that's not necessarily a bad thing. Lauren is known for her mad moving skills. She's got it well under control and may one day write her own book on moving called How To Move Using Only Trash Bags. It would be a bestseller for all 18 - 25 year olds. She's 28 now, and has called the moving company to take care of it all. I'm pretty sure moving boxes will be in her future nowadays. 

Just for good measure, here’s this

Brooks really does sleep in a crib here and there, but as most babies do, he prefers a warm body to sleep upon. 

What else is happening 

I look forward to heading back to Dallas the last week in January for my 2nd covid vaccine. I'll check the farm then, and although David and I both are not really seeing family and friends (in our attempt to minimize David's propensity for covid) it gives me a chance to go see all the animals and check the farm. David will be staying in Houston for this expedition of mine. We are still teetering on the thought of going home this weekend.

We are fortunate to have our caretaker at the farm twice a day, and then Angela and Paul are thankfully visiting as often as they desire to love the animals and clean the barn (only as much as they want, as chicken poo is not very glamorous). We have an egg customer who texted me that he went and plucked the fresh eggs out of the barn himself (he texted and asked if he could) and said he happened to "feed the dogs and birds" while there. We also have Cody and Amy coming over to check on Carlos regularly.

Who is Carlos?  

Turns out Amy and Cody (friends of ours who also fixed our front deck and put the flag pole up for us - C.A. Decking and Construction) have a new silkie black rooster. Amy very-much wants more silkie chickens and since they are pricey, thought we could work together on project “Silkie Chicks”. So, Amy brought Carlos, her black silkie rooster over to join our designated Little Girl Area, where only silkie and frizzle chickens live. They have a large fenced in area where we try hard to keep them safe. This all happened this past Monday, and Amy is coming by the farm periodically to check on the progress of it all. Silkie chickens are known for being very broody (sitting on their eggs). When we used to have Post Malone, our only (silkie) rooster on the Graves Farm, we had silkie chicks galore and ended up giving Post to someone else who wanted to experience lots of chicks. Fast forward to now. We are doing it again. But this time, Amy is there as the Conductor to help make sure the symphony performs as it all should. There may actually be a batch of chicks before we even get back to Gunter?! Who knew. 

We haven't seen Carlos yet, but if and when I go back home to Gunter, I'll get a photo so we can all see what the man-about-town looks like. This is ultimate goal:

sweet baby chicks under their mamas wings ❤

Planting seeds

As each day passes, David and I plant seeds that are intended to help with our growth and survivability tomorrow. My sister and I often talk about the seeds of bluebonnets, as her husband, Gene is a landscape architect, and also David as an avid bluebonnet lover - both of whom speak bluebonnet fluently. Texas bluebonnets have large, hard-coated seeds that cause them to have a low germination rate the first year or two - and sometimes longer. This is natures insurance so if there's a drought or rough conditions the first year or so, the seeds get another chance at life the following year. As the hard seed coats wear down, they eventually begin to sprout. The hard seed coat is an excellent mechanism for survival during unfavorable years. I've embraced the bluebonnet seed as a metaphor for times like these. Times can be tough and our seeds are sowing right now. But if we wait for more favorable times, we will bloom. We will bide our time during this drought, as both my sister, Sheryl and I both know oh-so-well, we will bloom again. When the conditions are right, as God will provide the water and necessary conditions. The wait is worth it. The beautiful blooms will come. 

Let's see what tomorrow brings,

Cyndi

 

Day 10 Still standing

Whatever makes your soul happy, do that

While David is out and about at MDA or resting in the apartment, I'm making my way in this new world called Houston. I've been able to get out and run with the Littles, using my cart so that I can take them on longer distances. 

Trying to chew herself free

When they get tired, they get to ride. Their milage is pretty high right now for small dogs. Maybe is 10 years old and doesn't run as far as she used to, but she really enjoys the ride. Maybe can run a total of 3-4 miles out of 10 miles I may run. Sugar is 3 years old and runs more than she should. I put her in the cart. She asks to get back out. It's back and forth and, although disruptive with the running process, we both get a good work-out. 

Sugar has several locations in the cart that she enjoys 

Usual positions when not running 

Sugar can typically run about 5 miles of the 10 miles we may go. 

Maybe is usually on the other side, as well

While they enjoy a good run, they also enjoy taking a walk and smelling all the smells. This is great, except the change from walking on country roads in Gunter to walking on side walks in a hustling and bustling city is frightening, at least for Sugar who is already a little broken from a previous life (before we adopted her). 

And the “ just checking if you’re there,  mom“ position 

Let's see, she's scared of:

These things make scary sounds

These large buildings have large noises coming from some of them, and Sugar is not a fan. Just as she's trying to dodge the rumbling noises coming straight at her as a personal attack, this blows by her:

Why why why is it here and there and everywhere 

Besides the tran/train thingie on the flattened railways in the road, the buses fly by with a flowing whoosh, and sometimes an occasional brake squeal. Her only saving grace is that, her kryptonite, 18-wheelers are not on these same streets we run. Yet, there's something new to look out for:

This is never good

Sugar will propel herself about 2 inches off the ground to not allow one paw to touch this foreign object that is constantly arising on the sidewalks. That, or she quickly attempts to go around it with 98% accuracy. 

The first dodge over to the side was because of one of those crazy buses going by, then a manhole cover comes along......geez....just trying to run over here. 

Since we now live in the heart of the Texas Medical Center district, there are plenty of bright sounding (and looking) ambulances zooming by, much like ants at a picnic - they are everywhere, every time you look around. There are also an incredible amount of care-flight choppers in the air with noise pollution that rivals the industrial sounds of generators, air conditioners and ginormous electrical boxes/units (see above) all that generate what is needed for these monstrous multitude of medical facilities.

All five of the dog's senses are on high alert and highly in tune when we are out and about. They are adjusting, yet Sugar is lagging a little behind in her adjustment. Surprise, surprise.

Sugar Pie Honey

The background of Sugar is unknown. After adopting her as an adult, she would not eat dog food - wet or dry. She was tiny and needed to gain some weight. I knew then I was "one of those dog owners" that fed their dog people food. After the vet looked at her teeth and cleaned them (dental procedure while asleep) we found out her chompers were more like squishers. She has minimal ability to chew dry dog food, and even when it's softened and/or canned dog food presented, she says, No thanks, I'd rather starve.  

So our life changed, trying to figuring out what people-food she would eat. Cheese, any meat cut up in the tiniest of bites, and more cheese. Her diet is that of a 2 year old. No veggies please. We have fine-tuned how and what we feed her now, and it's inconvenient, but do-able.

The next challenge was her attachment to me. It took about 6-12 months for David to even be able to pick her up. When I would go to work, she would await my return:

Waiting here

And here

And then here

Sometimes she waits here

Or here, as she knows I'll be driving up into my spot

And now that I'm working from home, she's in my lap much of the day. Our co-dependency issues may likely never resolve. I'm beginning to think that even therapy can't fix us. 

Sweet Maybe

Her saving grace is Maybe. Maybe was raised by us as a puppy and is seemingly a normal dog. Food-motivated in her old age, but fairly normal. Maybe shows Sugar how to be a real dog, and Sugar has come a long, long way. But the road is long.

The apartment here in Houston has been another challenge for Sugar. Something about one of the bedrooms and one of the bathrooms causes her to start shaking uncontrollably. There's a sound, or maybe a smell (we are not sure what it is for sure) that's familiar to her that brings back bad memories. This just our theory, but we know that she's definitely not comfortable with the environment and I imagine she looks forward to getting back to the farm. Maybe and Sugar no longer have free-will, and must be leashed to be taken out the front door. It's the rules. They both do well on leashes so we are good there. It's the free-will part they miss.

Ironically, the dog's de-stress activity happens to be the same as mine - being outside and moving. Our new version of free-will, as we call. So, we all three look forward to getting out the door and moving (mostly running) all while navigating new streets, new people and beginning to adjust to the new sounds. We enjoy the freedom to do so, and Adventure Land here in Houston never stops. 

Low Bar Lifestyle

As I rotate through the responsibilities of my life right now and carve out time for my passions and hobbies, I excel at the low bar lifestyle. I am seemingly eliminating all (what I deem) unnecessary self care and household duties. I'm setting the bar low so I may invest more time doing the things I really want to do. i.e. running, walking, cycling. It just so happens that a mask covers a large portion of the face which is always helpful when it comes to face self-care and makeup. I can wear the same clothes over and over because I never see the same people here in Houston. Leading a low bar lifestyle actually helps keep my priorities in line. 

As my road bike is back in Gunter on the trainer, I cycle to nowhere in the cold, winter-time weather. I do enjoy running and walking in the cold, though. Next to that, my favorite thing is anything outside on the farm. Cleaning the barn, caring for the animals, mending fences, anything outside and on the farm is my jam. As we move through this chapter, I am fortunate to have wonderful people caring for the animals and the barn until I can get back to that - and my barn therapy again. So very grateful.

What makes you vulnerable makes you beautiful

Thank you, Brene Brown. I've long blogged that she's one of my favorite authors. She reminds me that courage is telling the story of who you are with your whole heart. This can be challenging, exposing yourself to the world. Brene says that owning our story ,and loving ourselves though that process, is the bravest thing that we'll every do. I read and reread her words and let them melt into my mind and soul. I need these words, and it's Brene and many others that contribute to my growth as a human bean. 

I, too, have my own personal trials and tribulations with cancer. This is where it gets tricky. Who is supposed to care for who. So it seems this will bounce back and forth. David and I tease about it, as it's our way of finding humor in a tough situation. We keep it light, yet we tackle the heavy when we need to. I'm feeling pretty good these days, I mean, I still do many thinks I want to do. How could I even complain? Anne Frank didn't complain. She's my inspiration, reminding me that complaining is a choice. I'm just a Girl On Fire, as Alisha Keys would sing. I feel strong, I feel safe. I feel vulnerable. I feel like a girl on fire, whose spark is all that is within me. I'm going to keep going, until I can't. And that's when I'll stop, when God decides it's time. He knows, and I trust that. I'm grateful every day I wake up, and a soft audible Thank You escapes my mouth. Then I rise, work and play all day. It doesn't get better than this. Well, maybe it can get a little better than right now, but I'm okay with right now.

How's the birthday boy

I think the best way to explain how David is feeling today is the post-birthday feeling from when you turned 21 years old. That next day: the headache, woozy stomach, nausea, dry eyes and the need to lay around all day sums it up. David is having a post 21-year-old-birthday-celebration feeling today. And that's okay. We'll take it! 

What's up, Buttercup?

The last two days of this week, Thursday and Friday are radiation only days, with a follow-up visit with his chemotherapy oncologist on Friday. Goals, you ask? Our goals are to keep David hydrated, not nauseated, and blood sugars under control. This along with the usual jaw exercises, fluoride stuff, lotion on skin, special cleansing products, eye drops and ointment, lots of tummy medicine, nasal rinsing, mouth rinsing, and I could go on, but it's all do-able right now. We haven't fallen off the slippery slope. I'll let you know when and if that happens. So far, we are staying in our lane and going nowhere fast. Exactly what you need to do in recovery. Me? Well, I'm getting out and running, taking care of my physical and mental health, and finding the time to see the beauty in it all. The self-awareness helps, as the more I practice that, the more it helps me realize that we will go through this, then we will move forward. Perfect, let's do that.

Cause I'm feeling myself today,

Cyndi

Day 9 Birth Day

He's rubbish at turning lights off but awesome at shining his light

Happy Birthday, David! Look at you, showing us all what fighting the cancer fight looks like. I am inspired by your bright light each day, knowing you will shine it on everyone at MD Anderson all day long today. 

The day started as I drove around that area looking for a donut shop at 5:30 am. David has dropped the old "isn't there a donut shop around here" line several times lately. Diabetes is not friends with donuts, and since diabetes is David's close friend, donuts usually aren't. And, since the last set of lab results showed a good baseball batting average number for David's sugar level, it's time to buckle that belt a notch on sugar. Despite that, it's his birthday and even though he did not eat this morning, we packed his bag with breakfast and lunch for his busy day with treats (that he will likely just carry around and feel good that he has them). I'm going to guess he'll eat his turkey sandwich on sugar-free bread later on. He'll snack on the blackberries. And the donut and kolache will come back home in his lunch bag with some bites missing. Sometimes it's just the fact that it's in there is all that matters. It is your birthday after all. 

As we befriend the uncertainty of the day and week, David looks like he's heading out for a casual outing to Home Depot except he's got a lunch packed for it. He's got his comfy sweat pants on and his only DIY project is how to build a wedge pillow tower in bed. 

There’s a method to this madness 

His wedge pillow mountain is key for keeping the reflux and nausea at bay after chemo. Chemo = Burps. That sounds odd but this secret has been revealed to us now. Chemo equals many other things too, but it starts by getting you so out of sorts you don't want to eat or drink. That full-feeling will return along with the nausea and reflux. The radiation will continue to beat up his mouth and throat, so together it's a recipe for sleep and dehydration. We have been avoiding the 'sleep not drink' recipe as much as possible because nobody likes how dehydration makes you feel. Hydration is everything. I know I said sleep is everything but scratch that for a minute. ZzzzTown is easy to get to these days but WaterVille needs to be the first stop. 

We are stocked up on supplies as instructed. We've made our Target Run and Done. The instructions, directions and recommendations are all in our possession. And even though we think we are ready for this weeks excitement, it's like opening a white elephant gift at the holiday party. Wonder what we'll get.

Midday delight

Turns out for lunch, that myself and the Littles (Sugar and Maybe) decide to run up to the MDA building that David is at to met him for a birthday "lunch" outside between his appointments. 

We sit outside in the garden gazebo area that's very nice. There's many areas to sit and relax outside of MDA. Turns out, we share this area with panhandlers that pose as patients. 

Maybe and Sugar wait for food to drop

We enjoy our time together and then it's time we both get back to our things. He with his appointments, and I run back to the apartment to get back to work. He is still driving himself to his appointments so he'll drive home later on this afternoon after all the birthday fun is complete at MDA. It's nice that MDA is close enough for me to walk or run there. There is ample parking there and David typically drives each day and parks in the parking garage. There's a certain amount of parking fees that MDA covers for patients, and he generally only has a small, if any, amount to pay each day. 

These are littered through the apartment like confetti 

Let whatever you do today be enough

As David moved through his lab draw, radiation, radiation oncologist appt, chemo then radiation again, he did so with seeming ease. My favorite part of the day is when he comes home and tells me all the people/employees that he spoke with, what their names were, who he encouraged, who he assisted with directions inside MDA (it can be confusing), and how he's working on remembering so many names in each department. He teasingly pits the radiation dept employees against the chemo dept employees. He talked with the doctor about fishing and bbq, who he said only then really "perks up" and desires to chat. He makes having cancer treatment look easy. But really what he's doing is making something hard look easy. He laughs that "in 12 hours he better get the bucket ready beside the bed". He's performing his self care like a 16 year old teenage girl does. He smiles. He's had a great birthday not blowing out the candles on a cake but instead, shining his bright light on all those around him. After a 7 am - 5 pm day at MDA, he's ready for some down time and reflection. It'a a part of the day that allows us to celebrate the small successes. To listen to one another, and bask in our faith and trust in the Lord. We recognize that every day is a special occasion, this one included.

Birthday boy

Front Row Joe

As a special birthday treat, we are going to show a snipet of David's birthday day in the radiation dept and chemo dept - and take you there.

For David, his radiation includes lying still with a mouthpiece in and (for head and neck cancer patients) your very own custom-made mask on for about 15-30 minutes each day. Pretend for a minute that you're 10 years old again and on the soccer team. You remember the one called The Lady Bugs and every part of your uniform except the shin guards is neon pink. There was the coach on the sidelines who yelled at all the participants for 45 minutes straight. Yep, that's the tech in the room. He/she does raise their voice a bit because The Beatles is playing a little loud today over the speakers in the radiation room. They realign David as needed, just like the soccer coach: You're not looking at the ceiling properly. Be still. Very good, Mr Graves, yes, stay like that. Except there's no clapping involved in the radiation room.

As bumpin' as the radiation dept is, the infusion room/suite is quite the opposite. It's like going into a yoga studio. People intentionally moving about, no loud music, calming and rhythmic beeps from the IV infusion pumps all chanting their mantras. You may have the luxury of a recliner or a stretcher, depending on how long you'll be there. David has had both of those options thus far. You can read a book, nap, or turn inward and quiet your mind. Whatever that looks like may be different on any given day. Today, David brought his book.

Self Talk

Now we wait, again. As the hands of time keep moving, so do the side effects from his treatments. It's a slow build so far, but a windup that does not stop. The dry eyes, the headaches, the scratchy throat, the woozy tummy, the stiff jaw (jaw exercises are a must) and the myriad of other changes that creep up like a cheetah on its prey. Quietly and precisely. It's all a matter of time, my pretty. The goal is talking yourself off the ledge before you get there. Try and stay focused on not getting lost in your head about it, but instead just being. The good news is the physical side regarding the management of side effects is pretty straight forward. Here's the list of suggested items to buy and have, including over-the-counter and prescription necessities, and here's how best to use them.  The emotional side of managing this is quite different. Have you gathered all the techniques you need in your Coping Skills Toolbox? Have you etched a strong mind to push through? Have you gotten all your memos and permission slips written to your self? Have you befriended discomfort? Have you grown so much that your fear doesn't fit you any longer, like that old pair of jeans? The one thing I know for sure is something will grow from what we are going through - and it will be us.

As this extra special birthday closes and night falls, we continue to celebrate the life we have. Yes, I'm secretly brewing my potions to blend for David in the NutriBullet blender. What I've discovered is that learning to make potions is a vital skill not only in witchcraft, but in also creating remedies for illness and diseases. My new alter ego created for me, Cybil may not be wearing a long, black cloak all while weighing dried nettles and crushing snake fangs, but instead discovering magical healing potions and reciting prayers. I'll use my newly founded witch hood, pretend cauldron and bountiful apothecary all for good. 

Cybil 

Happy Birthday, David! We all love you! 

Thank you for gifting us with your bright light,

Cyndi 

 

Day 8 Day Off

Wouldn't it be nice if every week you had Monday off. The MLK holiday brought a day off to those in treatment at MDA. It was a catch-up day for David and other patients in treatment. It gave him a day to wrap up things at work, rest and recoup. While I was in Gunter for the weekend, he rested. It was actually a productive weekend for us both, as his job is now Healing, and doing all the things for that to happen. 

Still doing things

First up, radiation things. Tell me more, please.

The radiation guide leads all head and neck radiation patients through this process. What to expect, who the care team is, weekly management visits, planning and receiving treatment information. All this information is important but what many patients really want to know is: What are the side effects? And how do I care for the side effects at home during the treatment. 

The timeline is my treatment bible

Fatigue is the first side effect listed. I first noticed this with the increase in naps/sleeping during the day, and then that David can still sleep at night. Hair loss and skin changes have not caught up with David yet, but likely will with time. Due to the sinus area being in the obvious field of treatment, his nose will feel stuff, congested and may have bleeding. Swallowing is affected as the throat is also in the treatment field. Eating soft foods and drinking meals will be guaranteed. The guide talks of the possibility of a speech pathologist to assist with safe swallowing, and what nobody really wants, but may be needed, is a feeding tube. You probably know by now this is a personal goal of David's to not have one, but we just can't predict that. As the salivary glands are nearby in the treatment area, the saliva gets thick and sticky. Taste is likely going to be distorted, with some foods tasting bitter, metallic or have no taste at all. Pain is included in the side effects due to a myriad of things such as skin burns, difficulty swallowing, eye dryness, crusting inside the sinuses and many more things I could list but you get the idea. The helpful part is the chart that illustrates how long to expect these side effects to occur and the average recovery time of them. It's always good to know as knowledge is power. This helps all the patients put a general timeline to their side effects, although everyones will be a little different depending on their own radiation field of treatment. 

Can’t stop the feeling 

It's time to talk home care during the treatment. 

Bathroom pharmaceutical explosion 
Only one side shown

David already has his arsenal of remedies, medication, mouth and sinus rinses, creams, lotions, fluoride, and nutrition elements ready - or at least the first line of defense for what's to come (and what has already arrived). 

CVS in the kitchen

He has jaw exercises to do several times a day to fight the tightness that develops. Nutrition is key, and what we place in the NutriBullet Pro blender is very important. 

My newest fav thing ever

Fruit, protein powder, ice (water), yogurt, fresh veggies and more. I'll be honing my smoothie skills over time. We'll see what the favorite recipes wind up being. I can't sneak in the veggies yet. Not yet......

Thank you, next

I could spend way too much time talking everything radiation, but I feel like a general overview is fair. So, with an understanding of the (above) stated side effects of radiation, let's talk chemotherapy. Once a week (generally on Tuesdays) David has chemo. The agent used for him is CARBOplatin. Before each chemo session starts, the nurses administer zofran (anti-nausea) and dexamethasone (steroids) through his IV. He does not have a port, and they start an IV each session right now. 

Giant chemo book

The chemotherapy guide is about 3 times bigger than the radiation guide, and that's about what the chemotherapy does too, it hits about 3 times as hard. David has his chemo once a week (mostly on Tuesday) and then will likely be sick for 3-4 days. The number of days afterwards is still a trend we are watching. Not all our data is collected yet as there has only been one chemo treatment thus far. Yet, we will figure out the timing of the effects and should become able to rely on what those after-results will be and about how long they will last. It increases with time, so there's that. Along with the side effects of radiation there will be the side effects of chemo simultaneously. As in the photo above, there are more side effects of chemo so it seems. What we've noticed so far is that it's sometimes hard to differentiate which cancer treatment is really causing which side effect(s). None the less, our guide books help us with home care. It also takes about the importance of protecting loved ones from the chemo agent. It reviews everything from not "splashing" when using the restroom, cleaning soiled bed linens and towels to keeping the bathroom clean and free from the toxic chemicals excreted from the body such as urine, stool, vomit or body waste. Safe handling guidelines are important for not only the patient but for the caregiver. 

It's a real thing

I wish David had never seen this

Little would I know that David has one more reason for forgetting where the keys are or where his wallet is. It's Chemobrain. Turns out it's a documented effect of chemotherapy, and he'll probably use this for the rest of his life. 

Is wine-ing allowed

Nope, no alcohol - not that we are big drinkers anyway. Instead we'll stick to  clean foods as much as possible. Is whining allowed? I think there will be a fair amount of David sharing his feelings. I'm here to try and soothe his soul, body and spirit as much as possible. So let's get this week started, shall we?

First up, David's birthday is tomorrow! He'll be 63 years young and has a big day planned:

Wake up and head to lab work at 7:30 am

Quickly head down the hallway(s) to his 1st radiation session of the day at 8:30 am

Next up, a visit with Dr Rosenthal, his radiation oncologist for his weekly management check at 11:45 

Then jiffy quick over to the infusion center for his chemo at 12:15

And lucky him, since it's his birthday and it was a holiday on Monday, he gets a 2nd radiation treatment at 2:50 pm. 

We had originally thought we would celebrate his birthday Tuesday evening, but instead will spend the evening at the apartment and have a nice bland, soft meal and a zofran for dessert. And probably early to bed for the birthday boy, too! 

Last day at work

As David moved through this MLK holiday treatment-free, he used it to tie up all the loose ends at work that he could. With increased congestion in his sinuses, scratchy throat and mild nausea lurking, he finished the day strong and is ready to tackle his new job of healing.

. 

He loves his green screen 

We did have a meal out tonight, as after 3 days of down time, we were able to get out to his favorite meal of a gyro sandwich at Nikos Nikos here in Houston. Comfort food, warm and soft. What a great evening it was. 

We’ve only just begun 

We will call it a night in anticipation of a busy birthday Tuesday. I feel like I've only scrapped the tip of the iceberg regarding all the information we were given for both radiation and chemo. David said it best tonight with his closing remark, "I'd rather not know all of it, and just take it as it comes". I'm all about that, with the exception that I need to be the one prepared - or at least mostly prepared. Can I be willy-nilly and prepared all at the same time? I think so, because as I practice my potions in the disguise of smoothies, David has given me my witch name of Cybil. I’ll get to brew up lots of things for him over the next few weeks. Let’s see what it all brings us and tackle it as we go. We'll try to stay ahead of the curve, but we are on a slippery road and here's hoping we stay in our lane. Now where did I leave my magic wand.....

Peace and blessings, 

Cyndi