Day 5,6, 7 No one fights alone

David wears his blue/green polycythemia vera wristband and I wear my maroon/white (head and neck cancer colors) No One Fights Alone wristband. It is our tribute to each other and all the other cancer soldiers/families/friends out there. Every day I think about all the other people who had walked in my shoes previously, now and even those who will be walking this walk in the future - and have no idea. Who are they? What is their story? I see them at MDA walking around, in wheelchairs and going through all the motions to try and save their life. What I know for sure is it's really hard to get it, until you get it. That sounds so dramatic insinuating that someone could not possibly understand until they have walked this walk. Which is precisely why I love to blog. It has the ability to allow others to step into their shoes and try them on. The details can be edgy at times and the personal moments very personal. Yet, knowing what goes on behind closed doors is something I've often wondered myself and have been offered the gift to illustrate it to other people who are wonderers as well. It takes time yes, but is so very therapeutic. It may not be a masterpiece of writing, but not all stories have to be well written to convey their message. So, I keep-on-keeping-on to tell the story of David, who has SNUC and has chosen to invest in what the experts at MD Anderson have recommended. Why would someone not? Money, time, denial, transportation, responsibilities and I could continue with all the "why's" but I'll stop here, as everyone has their reason(s) for what they do and I respect that. David has chosen to go to the edge of the earth and back to fight SNUC. Sure, it is easier to have the chemo and radiation separate but that was ill-advised. The cancer is too aggressive, they say. And time is not on our side for the microparticles left behind to move about the body and spread. Aggressive cancers need aggressive treatments. So here we are, blessed beyond our own belief that we are able to walk this walk. With Week 1 (of 7) down, we keep putting one foot in front of the other. 

When the rain is over, you bow

That rainbow will come, but first the storms. The hard driving rain, the hail, the cold winds and feeling like you're out in it all without your coat and umbrella, for hours, even days. David had his radiation on Friday and things are changing. He can feel the heat from it seemingly starting on the right side of his face and moving through his checks, around his eyes, across the bridge of his nose and on his neck from the radiation. He can feel the casual burning sensation on his skin, almost like he stayed out in the sun a little too long as if he's been outside laying in the sun, as if intentionally working on his tan. No sunscreen, no hat. Most all his senses are becoming affected. His eyes are too dry for his contacts much of the time. His nose is scabbing inside from the burning of the radiation. His hearing even lessened, so it seems, although he's unsure if it's less wearing of his hearing aids or the treatment. His throat is having that feeling you get when you first get a cold. It's scratchy and you know that the soreness is on it's way next and not because he has a cold. As he lies there with his mouthpiece and mask on, gazing at the ceiling, he has less saliva to manage. And David might even tell you that this is the best part of the side effects because he does not have to really worry as much about the swallowing-with-his-mouth-open mouthpiece now (although he was getting used to it). It's an indication that his salivary glands are not able to do their job like they used to. That's the radiation effect, and as we move forward, we prayer for safety for his eyes, ears, nose, and throat to have enough function to allow him to swallow. We find ourselves asking for God to spare his eyes and ears/hearing. Nothing is guaranteed, and we pray for his safety, as well as the health care workers caring for all the patients at risk, as the after-effects can be troublesome when it's all said and done.

Friday, Day Five was radiation only. It was enough though, as David came home and went straight to bed. The chemo was still causing nausea and fatigue, and his body is trying to manage all these new chemicals - and radiation - coming into it. He's afraid to eat or drink in the morning before radiation in hopes that he won't have a throwing-up incident with his mouthpiece in and mask on. It takes everything his body has to process all that's happening, and sleeping is his recharge and comfort. I wake him often asking him to hydrate and drink. He has this weird full-feeling all the time that makes it hard for him to want to drink, and quite frankly, he's never had to drink so much before. (Besides the occasional poker game). But the radiation is drying him out and the nausea from the chemo talks him into sleep instead of drinking and eating. 

Just Like Brooks

Sweet Brooks is wonderful. He's learning to sleep in his crib, process his environment, and keep his spitting-up under control. 

He's doing very well! He's adorable from every angle and in every picture. Even when he cries he's cute - or at least I think so. Lauren and Ryan spend every waking moment anticipating his every need while trying to keep their tiny human alive. Then, it hit me. OMGoodness, I'm doing the same thing over here, except my little Brooks is big David. Here, here's a smoothie. What sounds good to you? Just water? No? How about we try some Sprite Zero. Are you hungry? We need to eat, sweetie, at least something. Okay, let's try this different smoothie and see if your tummy handles it a little better. Burpy still, huh? Okay, have you potty'd today? Want to lay down? Okay then, let use the wedge pillow. More blankets? I know you're cold, so let's turn the heat up. Oppp, let's change you into something more comfortable. What? Whataburger sounds good? Are you sure? 

This makes me realize that using my experience as a mother will help with the anticipation of what David's needs are or might be. Yeah, that's a shift in how I was seeing this. Now I get it. Okay, now that you've put it that way, it sounds easier. And the best part is David hasn't cried....yet. So that's a plus that Lauren and Ryan will not be able to eliminate the crying for many years to come. That very loud cry of a healthy baby boy. What a blessing, though, right?

Home Alone

It was difficult to head out to Gunter for the weekend leaving David in Houston. We had expected that he would feel up to going. Some of my plans were to give heartworm meds to the dogs back home, clean the barn, check on the projects that were completed this past week (while we were gone) and pick up some of the things we left behind that we decided we needed. The trip would prove too much for David, and I knew this early in the day on Friday, as he made a difficult decision to put his notice into work that starting Monday, he was on PTO/leave until the beginning of March. His body is not going to allow him to work, as the schedule for what's to come next week treatment-wise is just not going to allow his body to cooperate at work. As of Jan 18, 21, he's now a full-time healer. That's his one and only job. Attempt to do as much as he can to allow his body the ability to heal (as much as it can). Drink, hydrate, drink some more. Eat too (even if it means drinking a meal), take his medication, speak his needs, and focus on healing. He says he'll drive himself to the cancer treatments, until he doesn't feel comfortable doing so, then I will drive him each day. We will take this day by day. Our intention to communicate and work together stays strong, and as each day passes, the importance of that is more and more apparent. We need to stay focused and not let our guard down. What we do now is important in regards to what the next day will bring. Hydrate today to stay ahead of the game as long as possible. That slippery slope is slick. We are working hard to not let that barking, ravenous dog chasing us to catch us - and bite us. 

Chickens are magical

While home this weekend, my first order of business is barn therapy. Seeing all my chickens happy and healthy makes me smile. When they are happy, I am happy.

How many chickens is too many? Well, I think I've determined that answer now. There's too many when you can't keep your barn clean. Luckily, I can keep my barn clean, but it's harder when you're not there to clean it. The caretaker who comes to feed morning and night feeds all the animals and also makes sure they have water. But there's not enough time in her own day to really keep the barn clean, it's just not feasible, nor what most people even want to do. So, we have two dear friends in Gunter, Angela and Paul who are going to come and take on the task of helping keep the barn clean. Technically that translates to cleaning up chicken poo - let's call it for what it is. It's about to rain for 4-5 days straight (according to the weather) and that barn is going to get bad real quick-like. I cannot begin to express my gratitude for this, as if anybody were to ask me what I need right now in all this going-ons in our life.....it's to have my barn cleaned for my chickens and guard dogs. My soul needs that. What brings me the most joy is calling my chickens and that they actually come. Or better yet, when I don't even call them and they follow me around like that one ex-boyfriend used to. They each have their own personalities, their own voice, and preferences on being picked up and/or petted. I'm so far down the crazy-chicken-lady road that I add complete strangers who are into chickens on social media. You like chickens? Me tooooo! Hi, I'm Cyndi. I mean, I even had an electrician over a month ago (or so) and as he worked on an electrical outlet, he was commenting on my chickens. Turns out his wife is as coocoo for chickens as I am. Our conversation went something like this:

HIM: My wife is looking for a silkie hen, and she can't find an affordable one. We have a silkie rooster and she would like to have silkie chicks.

ME: Oh, have her call or text me and I'll give her one of my silkie hens.

HIM: Great! She'll be thrilled and she's been looking for one for some time now.

20 minutes later, his wife texted me (Amber) and 1 hour later she was at our farm. I proudly presented her with one of my all-white silkie chicks whose now grown into a beautiful teenager (all white, phoofy and luscious). She cried. Free.99 for you, Amber, because she is one of my people, and I hers. She carried her precious one in her arms the whole way driving home. Once she made it back home, she texted me to say she named her Cinderella. My heart was soaring with happiness and what a fabulous name for that beautiful chicken. Then, about a week ago she texted me this update: 

😭😭Amber calls her little silkie hen Cindy, for short. Crying over here. I love life as much as I love chickens. 

Taking a dog named Shark to the beach is a bad idea

Ahhhh, all the dogs. It seems I have just the right amount of dogs. On my way home to Gunter Friday night, I stopped by Lauren and Ryan's house to pick up their dog, Tula. David and I had agreed that it’s best for me not to be around people due to the exposure with the covid pandemic. In our effort to keep covid away from him while he is having his cancer treatments, I would not be holding Brooks, hugging Lauren, seeing my sister, or any friends. Lauren‘s husband Ryan brought Tula out to the car for me. He loaded her up in my truck and we visited a quick minute outside and then I left to continue my journey back home. I would not be seeing Lauren, Ryan, and Brooks the way that I would normally see and visit with them. We are FaceTime-ing for this time period as we move through the next 6-7 weeks. This was going to prove quite challenging, as I made my way back home that’s the first thing I want to do is put baby Brooks in my arms and give Lauren a huge hug. It will have to wait. I figured since I'd be at the farm for the weekend, Tula could have a mini vaca though. She's an Aussie with lots of energy, and does well at the farm running around like she's been cooped up in an apartment, or something. Winston (stray who is now a resident) loves Tula but cannot possibly keep up with Tula. Their interactions are fun to watch as a youngster vs oldie-but-goodie worlds collide. 

Winston is glad to see us, and Tula is glad to be out running, oh and glad to see everyone at the farm, too. Maybe and Sugar are in the mix of it all, as well as Levi and Whisper doing their guard dog thing. All is well in the dog world. I even had Tula shaved (Lauren approved) along with Sugar. Less dog hair in an apartment with a new baby is always nice. Tula will go back home Sunday night as I drive back to Houston, and Winston will await our arrival again for another week. But wow, it’s good to be with them for even a short period of time. 

This girl needs a sweater 

HOCO

David and I had decided awhile back that having a few home projects completed while we were away would be fun to come home to in March. Nothing big, mind you. So we decided on having the front deck redone and replace the wood railing with wrought iron. 

Our little KOA-looking house

The folks that did this are C.A Decking and Construction and simply put - amazing. They have done so much work for us around the farm that we consider them family friends. They are a sweet family with 3 young children and we adore them all. The work they do is first class and the other best part is that it gets done in a very timely manner. And that's what I (we) always want, "Can you do it now/soon?"

David and I have both been wanting a flag pole placed out front for some time now. We ordered it and were planning on putting it in ourselves. Then, a inguinal hernia showed up for David which eliminated him from being able to do that sort of thing, just weeks before we were to leave for Houston. He cannot have it surgically repaired (as is needed) until after his cancer treatments and he's healthy again. Luckily, they were able to get the flag pole placed and up, and I sent pictures to David of it. We've been talking about doing that for about 4 years and it's finally up. Not sure if a UT or Texas A&M flag will fly - or both - but we'll see what arrangements we make for that. There will be negotiations, I'm sure, revolving around that situation. What I do know is that I need to review my flag etiquette now that I'm responsible for the flag pole.  

Time travel

As time approaches to make the trek back to Houston, my own mini vaca comes to a close. I am fully recharged. I had my barn therapy, abundance of loving on my animals on the farm, and comfort that all is well at the Graves Farm. The drive is not too bad really, as I'm reminded often of how close we live to the DisneyWorld of Cancer. We are strapped in tight on this ride, and the rollercoaster has not only climbed that first big loud-ticking-sound climb, but we are in the first free fall heading for the double loop. I'm not so sure that our hands are still waving in the air like we just-don't-care. I'm pretty sure our hands are squeezing the guard rail that's holding our bodies in the ride tightly. Our fingers blue, and our eyes wide. 

David layed low this weekend, all while reporting his hydration and mediation status here and there. He rested this weekend as he gears up for another week of gazing at the ceiling and having first class room service in his chemo suite. I've got the NutriBullet Pro blender in my possession to blend my potions, along with various groceries all in the cooler while driving back to my little Brooks, I mean my big David. I love them both dearly. I will continue to quiz David and monitor his needs as his body takes a beating. As unfair as this all seems, I find peace in knowing this is but a chapter in the book of our lives. I'm going to feel it, live it, and do my very best to make this chapter one we will remember in a positive way. Humor helps. Our community of family, friends, co-workers (who are friends!), and friendly people we meet along the way ALL fill our soul with love, comfort and peace. We also pray for the others in the world who are struggling or suffering, as we are just a grain of sand. Together, we make a beautiful beach. 

Godspeed,

Cyndi

Day Four - ZzzzTown

Today is the tomorrow you worried about yesterday

On Day Four we arrive at the first official day to only have 1 appt at MDA. There will be many other days like today, but what's interesting about it is that even though there was only 1 appt, it still took a chunk of time from the day, as the bounce back is slow. The accumulation of radiation plus the chemo this week came knocking today. Knock, knock. I tried not to answer the door, but it's a persistent knocking of the new neighbor kids Nausea, Burpy, Fatigue, Dryness and Stomach Upset. Then, more friends arrived that took David's attention away from drinking water, Mr Full-Feeling, and then Mrs Imma Wonky showed up. And lastly, Ms Zz Sleep came knocking. All these new friends took him away to a place he did not want to go. It wasn't a matter of peer pressure, but instead a kidnapping of sorts. Kind of like when you joined band in 9th grade and they came to find you for Initiation. I might even say that these new friends are guilty of hazing. 

Luckily, David's old friend Mr. Omeprazole showed up with his brother Mr P. Bismol who came from far away to bring him back home. Ms. Zofran politely rang the doorbell bright and early Thursday morning, and we were glad to see her. They all tried hard, and we appreciate their effort. It was barely enough old friends for today, but glad they brought David back home, for now.

Now where did I put that comfort zone? 

It's been said that life begins at the end of your comfort zone. I liked that when I was participating in an endurance running race, or pushing myself through an Ironman Triathlon. I intentionally would push myself to my own personal edge and loved doing so. Now though, stepping out of what's comfortable and into a new reality is like going skydiving (because your best friend wants to) and you're unsure if you know where the pull is for the chute - after you already jumped. They showed you what to do, remember? But finding it in a time of free falling is a little different. As David and I move into the beginning phases of I don't want to drink more or I'm not hungry right now and it's week one, we talk about what this looks like. We have the conversation with self-awareness that we are now in this moment. I know you don't want to drink more right now. What sounds good? (He can still taste and smell right now). Nothing really, he answers. My brain spins in a thousand motions from nurse, to friend, to wife, then to caretaker. We start with various antacids, zofran (this morning) and general OTC meds to calm the feelings and beginnings of what chemo brings. It's time to think about making that smoothie. Bland please. David is not a bland kind of guy. He does have his wedge pillow set up, his humidifier by his bedside to keep his nose moist along with nasal rinses and nasal gels. He's putting his moisture eyes drops and ointment in his eyes. And a blanket the thickness of grandma's bedspread - and he's still cold. It started and here we are. 

Before the trip to cancer island, while we were still on the boat enjoying the breeze and warm sun, we talked about this moment. How we will communicate with each other. How we will shift the self care from him, slowly more to me. How to let go of the old us and move to a new version of us. It's happening and we see it and acknowledge it. The recipe for our success, from this early vantage point, is to communicate as clearly as possible, listen to each other, and explain our thoughts so that we do not throw verbal punches that are not productive. So, I watched as we talked about what was unfolding today, and we both are trying hard to set the best tone possible for this expedition to hell and back. Both silently wishing for that boat to take us off the island. 

I got this

Okay, I might not get it right all the time. But I've got it. Or I will get it. And it'll get better. What does make it better is the daily conversations looking into each other eyes listening. David is wonderful at explaining what his day was like. He's great at recalling what was said and who said what while inside the huge walls of clear, thick, shiny glass at 1515 Holcomb Dr. 

He explains to me in detail of what it looks like while looking into the laser of the radiation machine. Cyndi, the star in the middle is blue, and that's what shoots towards me. While it's shooting the radiation into me, the what-looks-like little doors open and close, changing shape, forming new designs, like it's morphing this way, then that way. He's fascinated enough that he shares a picture with me so I'll know what he looks at each day. Well, he's not really supposed to be looking at that, but he glances at it now and again because he's fascinated with the way it moves.

Gaze not stare

David is still being schooled for his (in)ability to stare properly in radiation class. Don't stare so hard. Stay focused on one spot. Look gently ahead. Today? It was "gaze, not stare". I hope he gets this figured out before the final exam in 6 weeks. 

Who's in Control?

I've been meaning to provide an update on the Yoga Therapy Study we are enrolled in. I've got my yoga mat and I'm ready. The phone rang the other evening, and it was The Study People calling to tell David he's been assigned to a group. I'm thinking: Oh goodie! I heard David say, Uh huh, Okay, Uh huh, Okay, thanks for calling. He hung up and smiled. He was so proud to announce we have been assigned to the Control Group. The Control Group will be the people everyone is "compared to". We stay the same, and we do not do the yoga therapy. We complete all the surveys like everyone does, and answer the questions given. Yes, David and I both still participate. We each get a gift card to Target for $20 every time we answer a survey. But no yoga. No goat yoga either, for sure. I am a little sad that we won't have free yoga. Especially yoga that is catered to head and neck cancer patients. David, on the other hand, is thrilled. 

Blend In

On my way to do some damage at Smoothie King tonight, I was thinking about the ingredient requirements I would need to pick for David. Let's see, low (as little as possible) sugar, bland, high ice/water content, some fruit is okay, and be cautious of the ones with caffeine (diuretic) or yogurt (too much sugar). I mulled the menu over like I was loading my shopping cart online and not buying any of it. I'm stealing all their fabulous ideas off the menu and then picking the ones I would actually get him tonight. Once completed, I left with not only something David ended up drinking tonight, but many options for the smoothies I'm going to make him myself. I got a NutriBullet Pro and will load it with lots of ice along with things he likes and also things he doesn't like and won't know is in there. He used to tease me about blending up a quesadilla when I'm old and can't chew. Funny how life is. Little did he know then that the day would come when I could actually use my witchcraft to create potions. It's not funny to mention that him losing his smell and taste only works in my advantage. That's not nice. 😏   

Just a guess

I'm going to take a guess that Friday will bring us both a vivid awareness of what this all really means. Time is not really on our side. They say it is, but whoever 'they' is, is not at MDA right now. I'm also going to guess that David will be feeling a little IDGAF-ish tomorrow. Just a guess. That's not his normal Friday feeling, but tomorrow is not a normal Friday. I am thrilled that we learned so much this week, and that God is easing us into this. I appreciate that He did not just throw us off the cliff. Instead, God is showing us the way with baby steps and we are most grateful. We are grateful for the ways that He's allowing us to move through this. God has seen millions of people through this process, we are not the first nor will be the last. Our pain is never wasted. It's merely a lesson for us to use wisely. No pain, no gain, so cliche yet still holds water. Go big or go home. Can we pick go home - and take a nap. And home is Houston for us right now, and it feels good. I'll see our "real" home late tomorrow night as I make my way back to Gunter to check on the projects, farm animals, barn and house. David will remain in Houston to rest and drink lots of fluid. Right, honey? Lots of fluids. 💖

Here's to the most amazing weekend for everyone,

Cyndi

 

Day Three - Three Things

Bloghap, Blogcident and Blogaster

Before I begin, I just wanted to apologize for the post yesterday, as it posted, then reverted back to a rough draft, and then a repost again of the final post. Geezz, seems my finger hit the 'revert' button. Any IT group would tell me it was user error. Their right. It's me. I'm her. It was a ID10T error. Thank you for your patience. Now if I could just find that 'revert' button on my life for a minute, I'd probably hit it, too. 

Keep your sunny side up

David shared with me this morning the 3 things that travel through his mind while the radiation machine sings its song, all while he's lying flat on his back staring up at the radiation machine sunny side up. He's not one to start a conversation like this regularly, but he did, and it warmed my heart to hear words from his soul that he often times keeps hidden from the outside world. (Thank you for sharing, David 💖 and I'll share the share, Sweetie). So, he reviewed these 3 things with me and on Day Three it seems appropriate to make a note of them. He started first with:    1) His primary fear (at this point) is actually not the diagnosis of cancer, and not the fear of treatment, but of the possibility of reoccurrence later on. He goes on to say that the unknown of the reoccurrence is what bothers him the most. SNUC is reported as an aggressive and fast growing cancer that is known to reoccur. Living life with a certainty of reoccurrence, along with the uncertainty of when it will strike is like a storm that follows you around waiting for the day you forget your umbrella and rain jacket. It's a dark cloud above you that no matter which way you walk/run/jump, it stays right above your head lurking. No one with cancer gets the Guaranteed Freedom Pass but some cancer's risk of reoccurrence is higher than others. David is hoping for the pass.    2) Secondly, David said he has a personal goal of dodging the need for a feeding tube. Granted, many cancer patients in treatment will need a feeding tube to see them through, esp for head and neck cancer patients whose radiation is directed all around their throat area. A friend who also recently had a head and neck cancer/treatment compared his swallowing to the feeling of swallowing knives. He opted for the feeding tube when the time came, and had good reviews about how it helped him. Granted, nobody wants one, that is, until it's absolutely needed. And you don't want to wait until it's absolutely needed because you don't want to wait too long. But in David's mind, he's going to do his very best to stay hydrated, as dehydration is your first class ticket to a feeding tube.     3) And thirdly, David said he thinks about hope. He hopes that this cancer treatment is his one and only. No one ever knows for sure, but he's holding out hope for that - and many other hopes and dreams as well. But he says that as the radiation machine's ticking and tocking noises flow into his ears, he lays there with great hope that this process will be what he calls his One and Done. He's holding onto hope tight, as we all are. Even Dr Hanna, his medical oncologist who knows SNUC inside and out said, "I'm hopeful that this radiation and chemotherapy will knock out all remaining microparticles of your cancer, and leave you with a life of seeing this all in the rear view mirror". If Dr Hanna has that hope, we will cling to it tight as well. And we thank Dr Hanna for giving that hope to us. There's peace inside hope. 

What's up, buttercup

Today's activities included only two appointments. What?! Only 2 today - and a sneak peek into tomorrow shows only one appt - his radiation. All the initial appointments and baseline measurements of eye sight, hearing, and oral/mouth/teeth have been completed. With exceptions here and there, our future plans are radiation every day, chemo once a week and follow up appts weekly with his radiation oncologist and his chemotherapy oncologist. They will make sure he's doing alright and guide us in his care to see him through this. We have the initial directions and instructions on how to mange what's coming up, but I think we all know this is a slippery slope. Still in week one over here and living the high life. Caution Caretaker Thoughts Ahead: But I see the edge of the slippery slope, and will watch my step carefully. I'm new at this, and my ego (not my friend) tries to create doubt about my ability to take care of the Future David. It's like the angel on one shoulder and the devil on the other. You can do it....no you can't....yes you can.....don't listen to them. To combat that, I'm like a sponge over here soaking up everything David says after his appointments, looking at all the paperwork, and listening to every word. I'm watching him care for himself with his self-care routine/rituals written neatly on the mirror. And I'm constantly thinking about the people who have paved the way before us. They have already been in our shoes here on cancer island. I think about the caregivers I've known, and set my intention to be like those who were positive and strong. Doubt is also not my friend, and while we are in the calm before the storm, I stay calm just knowing that God is here and watching over us. 

Sit down, no more questions

As mentioned (above) before I went off on a different tangent, Day Three consisted of 2 appointments. Radiation and then audiology. The audiology appt was the one that was missed on Monday (Day One) that was so jam packed. It's done now though. And radiation went, uh, let's just say, okay. As the days progress and David's getting in the flow of the radiation department, he's noticing a few key nuggets there. First, the fewer questions you ask the better off you are. 1 question per day is tolerable, and 2 questions is two too many questions. He's creating a databank in his head of who the nice tech's are there and who the not-so-nice ones are. He's learned you are not to be late there. They don't do well with late. And late is considered anything later than 15 minutes BEFORE your appt. Note to self: arrive 30 minutes early every.single.time. They even wrote their direct phone number on a card for him to call if he's 'going to be late'. The funny part about that was that they wrote it in black sharpie with big bold numbers like a 1st grader practicing their numbers. Clear, concise and large. I'm surprised they did not pin it on his shirt and send him home. They probably know he won't be able to see it as well....with time. His left eye is a little wonky after only a few radiation sessions. They have been around this block a time or two. The radiation department reminded me of the tiny Key West airport we were trapped in years ago, and after about 8 hours of waiting to board a plane that never arrived, the attendant got on the Loud Speaker and announced for everyone to "Sit Down! No more questions!". He had had enough of the whole 18 inpatient passengers asking over and over what the status was. And everyone sat down. No one asked any more questions. The plane arrived about 2 hours later and it was silent the whole time. David has learned to stay in his lane during radiation. Do as they ask and try not to ask a question. 

Run Wild

While discovering what it's like to learn a new city, I found that running around the area is one of my favorite ways to learn the street names, find restaurants and see what is nearby. Our apartment complex backs up to the Bayou Greenways, and it is one of many options to move about the area.I can go straight out of the apartment and over to the trail system lickity split. 

And the bonus of it all is the porta-potty right there AND I can recycle my things in that blue waste bin right at the entrance ramp to the concrete trail system. 

So many wonderful things about the Bayou Greenway. Well, except maybe the tents with people sleeping in them under the bridges. I'm never sure if I should say Hi or what. I don't know what the protocol is when I pass them in their home. So I say Hi because it's what I want to do. 

I typically take Maybe and Sugar with me to run (and the running cart) so they can ride when they get tired of running. How are they doing with this move? The story I tell myself is as long as they are with us, they are okay. It's not an option for them to stay at the farm on their own, so the apartment life is something they are adjusting to, like we are. They are great car riders so they go everywhere with us, as they wait in the car patiently for us to return whenever we go in a store or restaurant. If I ever thought Sugar was attached to me at the hip, this temporary move to Houston has created a brand new co-dependency relationship for us. I'm feeling like that's not a good thing but luckily there's therapy for that. 

Din Din

By far one of the best things that we've done in Houston so far was Date Night on Day Three. We went to Tiny Boxwoods restaurant. They have expanded to several locations in the Houston area with extensions of this amazing place calling their satellite locations Tiny #5, etc. We ate dinner like kings and queens and topped off the meal with their ever famous choc chip cookies (with ice cream and choc sauce). Please believe me when I say the BEST choc chip cookie e.v.e.r. I don't know how they do it, but they do it so well. Luckily, you can buy their cookie dough and try it at home. That will likely be in our future. Thank you to Dr P and Danielle who treated us to this extravaganza and while living in Houston themselves some time ago, found this place to be a personal favorite of theirs. We appreciate them sharing it with us, and they were there with us in spirit as we dined and relaxed on the patio. It was magical. 

Brooks Baby

We are, of course, missing our new grandson, Brooks. He turned 3 months old already. Mom and dad are busy trying to live life, work and keep a tiny human alive. We miss you guys!

Little Bo Peep

I'm happy to give an update on our 5 sheep who are doing fabulous. 

Luckily, Bo Peep is not looking after them, and our friends who have them are the most amazing people that we appreciate and adore. The horses are settling over at the farriers place for which we are most grateful.

The caretaker we hired to come and feed (morning and night) at our farm for the chickens, guard dogs and barn cats has everything under control in the barn. We also have someone hired who is rebuilding our front deck this week, and also having a flag pole installed on the property as well. Life is still moving forward on the farm. I plan on driving back to check on things this weekend, while David stays in Houston and catches up on some work. I'll be taking back things we didn't need here in Houston and trading it for some of the things we do need in Gunter.  And my primary goal for this weekend will be to dispense heart worm preventative medication to everyone. It's a monthly ritual, and this weekend is the weekend for it. 

While we finish the week strong, we are sending you all love and peace in your lives. I know you have many things happening in your own life, and we are hoping that you are able to stay safe, feel loved and know that we are thinking of you all. 

Grace and peace,

Cyndi

Day Two - The Doing

 

The only way out is through, apparently

In a very short time here, David and I have both come to the realization that saying and doing are two completely different entities. It's not that we didn't know this already, but the ah-ha moment was in the self-awareness of watching it happen in life right before our eyes. There's no looking away from this, as it's literally under our nose. Saying the words that we are going to move through cancer treatments vs actually going through the physical motions of cancer treatments is our newest transition. Talking is always easier than doing. That's why humans tend to not realize their dreams They talk about their dreams. It's easier to talk about our dreams, and that in itself can be fulfilling. Realizing our dreams....that's another story which does not include hitting the big red Easy button. 

This concept is in full motion for us right now. We are going from talking to doing. No, it's not a dream of ours to be here doing this, but nonetheless it's life unfolding. And the only way out is through it.

Don't look back, you're not going that way

Day Two's line up included: Labs, Radiation, then Chemo. Getting labs at MDA is like being in the drive thru at Chick-fi-la. It's a symphony of people working in unison in an effort to provide a service, all while minimizing wait time. Genius - and particularly in heath care, much appreciated. 

David had his labs drawn and results are provided not long after that. Once again, this process could be a musical titled, 'The Wizard of MDA' or "Little Shop of Labs' or 'My Fair Cancer'. Okay, I'll stop. 

David's kidney lab value's will be watched as his body begins to process toxins intentionally dripped into his veins. Liver enzymes monitored. Hemoglobin and hematocrit observed for anemia, among other values that will be tracked over time. His chemo will be held if his ANC is less than 1.5, or his platelets are less than 150 or his hemoglobin less than 9. If his creatinine increases by .05 over baseline, it's a yellow flag or if it's greater than 2 the flag goes up again for an alert. Labs will be collected before each chemo day, but not as closely watched for his radiation. 

Another important lab value for David is his blood sugar. Since he's diabetic this will be a challenge. Stress, diet changes, and eating of ones feelings (usually sugar) all contribute to an increased glucose level. I know David probably feels like a 7 year old boy arriving home with his report card when he walks through the door with his lab results. I'm at the door with my arm and hand extended, glasses on the end of my nose ready to inspect. I never said marrying a nurse would be easy, but it's times like these he'd rather sneak in and throw his report card, I mean, labs results in the trash. 

Since his glucose level came back at high, we knew we needed to take action early on. Yes, he had a pop tart for breakfast and as a diabetic, that's okay only here and there. But right now is the time to cut sugars, decrease stress as much as possible and gear towards healthy eating. I'm thinking once he can't taste/smell (pretty soon we are told) I'll be able to tempt him with foods that he ordinarily might not prefer. A girl can hope.

Every.Single.Day

Labs completed and David is heading to his home away from home away from home the Radiation Dept. This time, he knows what's coming. He heads to his cubby, just kidding, it's not kindergarten, but the process is similar. He pops his mouthguard in (I'm making it sound easy wink wink it's not), then the technician puts his mask on (watching his eyes) quickity quick. The symphony continues even in the radiation department with a technician on each side of him saying 'move up' 'more' 'that's good there' 'now find the spot on the ceiling' and so on and so on. They have no spare time, and will spend the majority of the time just setting up patients for the 15 minutes of radiation. All while David is staring straight up at the ceiling, gently of course, and trying not to choke on his spit with his mouth and tongue strictly positioned by hard plastic. 

The schedule for David, anyway, is radiation every day Monday through Friday unless it's a holiday. Holidays mean you get to skip that day, but have to make it up the following day with 2 radiation treatments - morning and then again in the afternoon. So a holiday is like a snow day in elementary school. It's great on the day of, but going back the next day just means more work. 

David is learning the tricks of the trade up there and it's only Day Two. There will be more to learn, but he's off to a good start. He said yesterday was like the first day going to junior high, and today was more like the first day of high school. You have more of your $hit together and care a little less about getting lost. He knows now to carry his Check-In Card which all patients use to scan at the kiosk upon entrance to the department, and it tells the nurses and technicians you are there and ready. 

He's also realizing what his forehead looks like as he makes his getaway from the mask and mouthpiece after his radiation treatment.

It's a combination of looking like SpiderMan and a honey baked ham all at the same time.   

Chemo Day

Each week, to add a little extra torture to it all, David has chemotherapy. Typically, it will be each Tuesday after his radiation. His labs are evaluated closely to see if he can have his chemo that day, and then he's off to his fancy-pants chemo infusion room. **A side note I wish to interject here is that when I've had treatments at Texas Oncology, the Infusion Room is nothing like at MDA. Rude.

David usually texts me during his time while at his appointments at MDA, and it's insightful to hear and see the flow of it all. It's also the only way family can support each other since only patients are allowed inside. It's our way of staying connected during the unknown of it all, and provide him support while he's there. 

His chemo of choice is Carboplatin. Well, not his choice, but someones choice and that someone is a very educated and well respected chemotherapy oncologist by the name of Dr Lu. After at least 5 passes at checking, double checking and triple checking the IV medications to be administered, IV in and ready to go, it's time to start the 3 course meal via IV. First course, Zofran 8 mg which today, he only gets 1 dose, This is his anti-emetic to keep the nausea at bay. Second course, Decadron 10 mg as the steroid used for inflammation. Thirdly, the main course of Carboplatin. Caution documentation tells us this is a hazardous drug and a vascular irritant. I think that's a given, don't you. They've named this 3 course meal Cycle 1. David will have Cycle 1 for awhile, until he moves to Cycle 2 around mid Feb. Not sure what the courses are for Cycle 2, but that's for another time. 

Back home jiggity jig 

With Day Two under his belt, David made his way home. As the evening went on, he begin noticing small changes creeping up. The congestion that they said would start accumulating in his nose, the crusting that develops in the nose, and a higher alert of his self-awareness with his body. We talked about our day, ordered food (to be delivered - thank you, Dr Waheed for that!) which we've never done since Pizza Hut in college. Then, we decided to watch the Pixar's movie, Soul. 

Have you seen Soul? So many relatable quotes from that movie, right? I loved the quote: "A spark isn't a soul's purpose". What? Did they read Eckhard Tolle's book, A New Earth? Didn't we just have this conversation in the last blog post that our roles are not our purpose. The irony gave me chills. And the quote in particular that made me laugh (there were many) was: "Can't crush a soul here, that's what life on earth is for" as 22 says that to Joe. Mic drop.

Here at the apartment, we have TV that has Disney, Hulu, HBO, real tv channels and so many others that I don't have room to list them all. This is a haven for David. It's going to be a wonderful place to recover all while watching just about anything your heart desires. I know it makes his heart happy. 

Date night 

So while David has his taste and smell, we are having a date night tomorrow night to celebrate life. Well, and celebrate his birthday early, too. On Jan 19th, David turns 63 year young. We will be going to Tiny Boxwoods (Thank you, Dr P and Danielle!) for a delicious 3 course meal that does not include having an IV. We will once again say a pray for peace, healing and patience. It's our 3 course prayer. God has a plan, and we need to be patient and listen. Silent, so we can hear what is being spoken in our hearts. Silent and listen. Different words using the same letters. Both of which take the greatest discipline to do. 

Vibrant love to you all,

Cyndi

P.S Shout out to Dr Pahlavan and Danielle for the treat to Tiny Boxwoods. I hope the nursery next door isn’t too loud 😉

Day One

 

Remember that time you went to go buy that new car or house, or invest in a beautiful new backyard pool. It's all in the negotiating, what the terms are, and promises are made to you about what all you will  receive in this process. You're hopeful, of course, and it all sounds good. Sign here. You do. Then things start developing, I'll just say that loopholes arise, extra money is all of a sudden required, and the deal isn't quite as sweet as it sounded. This is no surprise whatsoever. You knew something was going to pop up, but you just didn't know when or what it might actually be. I've discovered on Day One that cancer treatment is universally similar. Nobody wants to tell you 'everything' beforehand. Don't get me wrong, you are told much of the information beforehand, wait, a lot of information beforehand, but it's the blanks that get filled in later that really bring it all together. Unfortunately, cancer treatment isn't something you really want to pass up, negotiate, or pick a cheap option. Do it right the first time, and your odds are greatly improved, which is why we are at MD Anderson. Dr Pahlavan was exceptional in guiding us towards a "first time" chance is your best chance philosophy. There's not been a doctor here at MDA that doesn't agree with that. Get it right the first time so you don't have to do this again. Or at least try to, as there's never a guarantee. 

Wait, where was I

Back out of the rabbit hole I climb, and what Day One showed both David and I is that you can't really get all the intimate details of radiation and chemo until you actually sign up for the show - anywhere, MDA included. They don't have time to talk details if your not seeking treatment here 'for sure". But once your signed up and show up, you are officially on the ride. Welcome to cancer island. It's where the people who are in the thick of it are. The boat ride here was okay, but now the people around you are your people. Your face is their face, and everyone is there together. Then, and only then, does the bonanza of information arrive. The high level information initially given is great, but now, it's the real deal. Time to get down and dirty, and talk about what it's all about. And MDA does this masterfully. They don't miss a beat. 

Ready, Set, Go

Although I can't speak directly for David, I can spin what I interrupt from him, from watching his day(s), being here while he experiences it, and listen to all his words and attempt to bring them to pen and paper. So here goes. Day One was jam packed with appointments, as well as his first radiation treatment. 

But first, this may help review all of his sinus cavities that will feel the effects of radiation: 

Last first please 

I’ll begin with his last appointment of his first day. That’s where his treatment plan was reviewed in detail, with all other appointments Day One leading up to that big moment (yet all appointments of the day had a large contribution!). At his final appointment on Day One, his radiation oncologist explained to David that all his sinuses would have radiation. All of them. Above his eyes, to the sides of his eyes, under his eyes and checks all the way down to the top palate of his mouth. I was fortunate enough to be listening in on this particular conversation because David had me on a conf call during this crucial visit with important information being dispersed - particularly what the expectations are for David.               * no family is allowed in MDA at this time for appointments. 

 I was intrigued at how the health care team decides what all they decide. I mean, after all, at these appointments you will typically see 2 nurses, one PA, a fellow and then drum roll, the amazing doctor. Actually, they are all amazing. I digress. Dr Rosenthal (radiation oncologist) told David that they will also be radiating his lymph nodes in his neck as well. I know that David and I both took in a ginormous breathe of air (in our separate locations) when those words were spoken. What? Somehow in all the appointments prior we had missed this information. It makes perfect sense, as that's where the cancer would likely travel and spread. It’s common knowledge. Yet, still surprised over here because the side effects for radiation to that area adds many layers to what’s already about to happen. So, without missing a beat, Dr R stamps the plan in permanent marker and so it is written. Now we all know what’s about to go down in complete detail. At this point (since I’m starting with last appointment first) the radiation treatment #1 is already completed earlier in the day, so we begin putting all the pieces of the puzzle together. We are new at this, with so much to learn. Trying over here. 

The better to see you with

The 9 am ophthalmology appt was a unintended 2 hour appt that ran so long, it pushed all the other appts for the day behind. Eyes are important so no one is complaining, just noting it. The ophthalmologist and 22 people who assist with your visit there do all the things required to check all-things-eye related by running tests and gathering the baseline and information needed. Since the radiation David has is so close to his eyes that special care is needed to protect them. He has very detailed instructions for his eyes: eye drops 3 times during the day every day no mater what, and eye gel in both eyes every night no matter what. Okay, can do. There is never an exception to this. This must be completed to keep your eyes moist and operational. The word ‘moist’ turns out to be the keyword for this day and I imagine all days to come. Just keep everything from neck up......moist. 

Teeth are always in style

Now, David's off to the next appt with the oral oncologist (dentist) who proceeds to check his mouth, teeth and gums. It's during this appointment that David is presented with his final mouthpiece for radiation. Taa Dah!

What's unique about this mouthpiece is that is keeps his mouth open, pushes his tongue down to cover his salivary glands while he lies still for the radiation - and learns to swallow with his mouth open. They gave him exercises to practice what it's like to swallow with your mouth open. This “mouth department" (just like the “eye department “ doing their part) will try to protect David's teeth, mucous membranes in his mouth and his salivary glands. If the salivary glands get zapped too much, no spit for you. What we also learned is fluoride is the answer to every question. From today on and for the rest of your life, fluoride is your bestie. Fluoride trays, fluoride toothpaste (for at least 3 minutes each brushing) and flossing are of the upmost importance to keep your teeth intact. David's like a hot potato in his seat at this point because while all this is being reviewed and a bag the size of your grandma's purse is being handed to him with lots of product he'll need, of all things the Radiation Dept is calling him on the phone asking him where he is. The appointments thus far have been running so far behind, and he's trying to get there. Granted all these appointments are in one building, which is amazing in itself. That's one of the many things that's wonderful at MDA - is that all appointments are coordinated by them, and all appointments (usually) are in one very large, huge, gigantic building with an elevator system that surpasses any 7th grade math you've tried to figure out lately. 

Radiate on this

The time has arrived, and with his mouthpiece in hand and racing to the Radiation Dept after hunting for elevator G, he's arrived. 

Okay, change your clothes, put your mouthpiece in, here's your mask, put it on.......

He's now realized that when the technician put the mask on him, he was in mid blink with his left eye. Now with his mask on, his right eye is open, but the left eye is wonky, half open and half shut with his eye lashes caught in the mask. David has about 1 second to think about it as the instructions come his way. "Okay, now pick a spot on the ceiling and keep your eyes on it. Stay still. Don't swallow. Okay, swallow now. Push your tongue up. Push your tongue down. Be still". He is trying to be obedient so not to blind himself or die from the saliva collecting in his mouth. As he's busy trying not to drown in his saliva, figuring out how to stare straight ahead with one eye half shut, he realizes what seems like forever is about 15 minutes. After it's all said and done, the technician reminds him that "next time, maybe he can try not to stare so hard". They encourage David to gaze more gently at the selected point on the ceiling. I have a feeling he will continue to get constructive correction as time goes on and they try day-in and-day-out to radiate the same place each time. Day One radiation completed. Whew.

Where’s the finish line for this leg of the race

As the race continues to make other appointments, he's now missed his audiologist appointment completely. That one will have to be rescheduled another day. Okay then, onto the Yoga Study Program Dept for his 6 minute walk. Now, you do not have to go outside for this required walk as they have taped the floor nicely so that each participant follows the lines and arrows. The facilitator will determine how far you've walked, and because they need you to hurry up after the 6 minute walk and collect your vital signs real quick, you don't really know how far you walked in that 6 minutes. Part of this whole study has only patients performing the walk and vital signs afterward, as the caregivers do not. So far, we both each have completed 2 surveys online though - all a part of finding out what is happening inside people's heads as they move through the cancer maze. Ex: How stressed are you, how are you sleeping, yada yada yada and I know it's important to the study, so we do marinate on the answers to help give an accurate account. Alrighty, David has completed the required walk and we will be assigned to a group soon, I'm thinking. I wonder when the yoga starts.

I see the Finish Line

The finale of Day One was the appointment I mentioned at the beginning of this post. It was his final appt of the day and a discussion with the radiation oncologist was enlightening. This is where all the details were delivered. Every detail you want to hear and many you would rather not hear but need to hear. You've signed on the dotted line and now here's what you'll get. The “2-3 week timeframe” during treatment that you'll feel good morphed into “hurry up and eat all the things you want to taste - by next week". Oh, okay. Because the new news is by about the end of Week One (which happens to be David's birthday on 1/19) he'll not be tasting that birthday cake, he's told. He’s told he might need to stay home as nose bleeds are in the cards with a myriad of other unpleasant tortures coming his way. Good news? Recommendations for readily given for keeping his nose moist, sinus rinsing, using aquaphor in his nose, along with nose gel and any other way you can keep your nasal passages moist is optimal. Your sinus will be zapped to the end of the earth and back. Moisture is key. Your upper mouth palate will be sore, your salivary glands will cease to create that saliva you were once drowning in. And then the final ball of the day drops : eat what you want to taste by this weekend. No guarantees after that. Chemo starts tomorrow as well, and the nausea will be knocking at your door just as you're trying to keep everything moist. Oh dear Gaud. Welcome to cancer island. 

What the what

When David walked through the door after this most exciting Day One, he needed to sit down and process what just happened. Just like you do after you get off that rollercoaster, it's the pan in the face feeling and about the same time you say "just give me a minute". Very similar to when someone asks you "Are you okay" and the answer is "I don't know.". 

We visited about each other's day, but really it was more like a pouring of alien information into our lives. We knew at that moment (because of the thousand things and instructions they told him to do ALL starting today) that we needed to get organized about it - and start today, as instructed. 

We decided to categorize the process by body systems and keep track of what he's to do for each of the affected areas. If changes or additions need to be made, we can adapt and change the instructions as they happen. We decided having reminders on the mirror was the best option for us. It's time to get serious and get a jump start on moisture and self care. The Home Edit book is coming in handy - even here in Houston.

Apartment Sweet Apartment 

Our apartment is only about a mile or so from MDA. It's a 2 bedroom, 2 bathroom that is a corporate apartment that can be rented for your determined amount of time. We expect to be here until the end of Feb. Now, that could always change as the only thing constant around here is change. And that's okay.

We have everything we need here and are blessed beyond belief. As we call Day One done and thank the good Lord for all these blessings, we will await Day Two and see what that will look like. It's truly a day-by-day endeavor. David and I have set our intentions to use this time to learn and grow. Since we do not necessarily know what is really going to happen and how good or bad it will be, we smile and take each day as it's given. We have also set our intention to use this time to strengthen our own relationship. If the goal is to rid David of cancer and add time to his life, we both feel like nurturing each other in our own relationship is logical. For now, it's time to lay our heads down, say a quiet prayer and just be. We fight the urge to get lost in our minds and stay rooted in our being. We try, and that's the best we can do. Our best each day will be varying and different and acceptance of what "best" is each day is what it's all about. I've got that memo written already. Note to self: Just do the very best you can. Every day.

Peace and Progress,

Cyndi

A Crack in the Wall

Do you ever look up and notice that crack in the wall? Wait, is it moving? Yes, it's slow, but it's moving. It doesn't bother you much at first. You even think about putting something over it to cover it up instead of calling someone about it. Then, a door shuts wonky. Then, another door will shut but the lock is off a hair. Then, you look up and that crack is making a geometric design. And after awhile, you think the wall may even break off in a design not intended as art. Finally, you call the foundation repair person. You have put it off because you know it's going to cost an arm and leg, and wonder if it will even fix it, and if so, for how long. This is hauntingly very similar to health issues. I think I can wait on the teeth cleaning. I don't really like to go for my annual exam to the gyn. I could probably skip just one skin cancer check, right? I end up going most of the time as I'm supposed to but I sure do think about not going - a lot. I happen to be an expert swimmer in the river of DeNile. Although I do end up going for the follow ups as I'm supposed to the majority of the time, I spend a fair amount of time thinking of why I don't want to go. But I go anyway, knowing I'm just kidding myself about not going. It's all a game I've played for awhile, esp as the doctor appointments have exponentially increased these last few years. 

Don't believe everything you think

Yet, I've called the foundation repair company now. They came and went this week, placing 4 piers on the east side of the house, along with an engineer visit before and after to inspect it all, and then a plumber to come and check for leaks. Eventually, I will likely get the wall(s) fixed, the doors corrected and now know that my house is "that house with the foundation issues". Labeled. My house is now labeled, Foundation Problems dum dum dum. This hit home (no pun intended) as I think about all the labels my ego gives me. Runner, nurse, cyclist, triathlete, daughter, mother, sister, wife, friend, cancer warrior, among others. In Eckhart Tolle's book, A New Earth, he speaks about how our ego convinces us of these labels and how we wear them as badges. Eckhart explains that those are our roles/functions in life, but not who we are. Really!? Interesting. He goes on to explain that we are beings. Beings. And when we start to say I am fill-in-the-blank, we really need to stop at I am. I am. Period. It actually feels good to do that. I've started practicing that more and more. I fulfill my roles in life, but they do not define me. I am simply, I am.

When I was diagnosed with cancer, it became easy to wear that label and play that role of cancer patient. After the initial processing of a cancer diagnosis, it's heavy, but with time, it becomes lighter. Almost like acclimating to the bright sun outside when you first walk out the door, and then your eyes adjust. I wondered where that label of 'cancer patient' fell in line with all my other labels. It's then I decided to allow it to be another role in my life, along with the other 101 roles I play. And then transitioned to I am......and try to stay in the place of 'I am'.

What is for you won't go past you

Fast forward to now. I've added another new role/function, and one that is new to me: caregiver. Okay Eckhart, it's not who I am, but a role/function in my life. And David's new role as a cancer patient is evolving. Let's review. Sunday, Jan 10th we make our (not maiden) voyage to MDA for covid testing. Then on Monday, Jan 11th the adventure on cancer island begins. Radiation and chemo for 7 weeks, both simultaneously. David has been diagnosed with SNUC, and he's had surgery by Dr Pahlavan who we credit for saving his life by finding out David had this....early on. Thank you a million, Dr P! And now, it's go-time.

We have spent a fair amount of time visiting with others who have been through cancer treatments of their own, listening to their stories. We have watched Samatha Lynn on YouTube vlog her journey as a 22 year old breast cancer warrior with multitudes of treatments of which she has allowed others to follow her journey - the good, the bad and the cancer. And now, we will get a birds eye view, a front row seat to this same show. 

Louder for the people in the back

What I know for sure is that friends, family, co-workers, and acquaintances all have one thing in common. People are generally unsure what the "right" thing to say to folks in this cancer situation. My answer: There is no right or wrong thing to say, or at least to us that is. Saying what is on your heart and comes out of your mouth is perfect. Whatever you say is appreciated and accepted with love. This is a hard situation, one in which others want to comfort you. We in turn, want others to know how much their actions and words mean to us - it means everything to us. Not everyone feels comfortable saying something. And that's okay, too. Then others say something and wonder if what they said is okay. I'd like to tell you now, that whatever you say is 'just right'. There is no wrong. Our journey is your journey. Our pain is your pain. We will see this through together, and are most grateful for that. Never had we felt the need to accept our community as we do now. The support and compassion fills our soul with love, peace and comfort. Thank goodness you are there.

Party Train

When I first boarded the cancer train to cancer island, it was pretty tame. Monthly appts, treatments when needed, labs all the time, multiple blood thinner meds to keep my blood from becoming jelly. Then, oddly, David joined this same train I've been riding. His cancerversary is Thanksgiving. What I realized is that the train ride is easier alone with cancer, as you can make up all kinds of stories in your head and review it all like powerpoint slides in your mind. And no one knows. Now, David is along for this same ride, contemplating all the appointments, treatments, and costs associated with cancer. I liked it better when it was just me thinking about all these things, as I never would wish them for him to have as well. Can’t it just be one of us? Nope, sorry, he now has his own cancer and we are on a parallel journey together. That's a lot of words to just simply say, I'm on the flip side of the cancer coin now. The support side. It's scary over here. Let's see.....you worry about them, you wonder what they're thinking, you wonder if they're worried, you wonder if they are okay. You wonder if they are going to have pain, will their cancer spread, and what the future will bring. I've now changed from wearing the cancer warrior pants to wearing the cancer supporter pants. There's a lot of pants around here to be worn. Can I be a warrior fighting my own battle and be a good supporter too? Am I saying what David needs to hear, because from my vantage point, I don't want to be unreasonably optimistic and pretend everything is okay. But maybe everything is okay. In many ways, I'm preparing for the worst in my head, so that when the worst never comes, anything better than the worst is awesome. Wow, this support side isn't as easy as it looks. I’m concerned I’m even saying the “right” things to him. 

And weirdly enough, through this maze of thoughts, rationalizations and "processing", I'm filled with overwhelming hope. In the depths of my soul, I feel that no matter what happens, it's what's supposed to happen. And with that, I feel joy. I feel the old games I used to play with myself dissipating. No more excuses in my head about whether or not to go to an appt. I just go. I've leaned into this process, and my focus has changed significantly. My focus is now about each day and what today holds. How beautiful everything looks. How much I love my family and friends, and especially my farm animals and dogs. No one knows their own destiny, nor do I. My major shift has been the idea that it's likely sooner than I originally thought. That's all I really need to know. And if I'm going to be even rawer about it, I think I used to think I wouldn't need to worry about dying until I'm old. But what is old. 

All of this gibberish is simply me, letting out feelings. It feels great, and what I've come to realize is that most warriors just want to live their life not being labeled by being "that person" with cancer. But how can that not happen if that's where we are at in our lives? I'm still toying with that idea. It's easy for me to say I'm a runner, a biker, a nurse, a mom, a daughter, a cancer patient, a farmer, and so many other things. I mean, how many houses wanted to be labeled with air quote foundation problems. No one means for that to happen. Eckhart Tolle reminds me that role-playing is the many faces of the ego. "Don't mistake your role for your identity". He goes on to say :

"Giving up role-playing

Every role that we play is a fictitious sense of our self. Tolle points out that most of the people there are in positions of power are completely identified with their role. The way to overcome this problem is to end to give up defining yourself both to yourself and others."

Wow, Cyndi, so stop defining yourself both to yourself and others. That's huge. Thank you, Eckhart. Note to self: Work on that. I am. #trying

Always be yourself, unless you can be a chicken....then always be a chicken (not Eckhart approved)

On the farm, rubber boots go with anything, esp pajamas. We will be leaving our rubber boots by the door, in the morning as we head for Houston. Truth bomb? We don't know what's coming. We are headed at limitless speed towards cancer island whereby health care workers will take you to your own personal edge. Your limits will be pushed, your patience will be tested and your relationship will be strained. It's just gonna happen. I've decided to blog very similarly to when I ran across the U.S. in 2015 -  I'm going to blog most every day and speak of what unfolds each day. When I was about a week into a 3,000 mile run from Venice Beach, CA heading to Virginia Beach, VA, I had a best (running) friend, Gates speak some very wise words to me. He said (over the phone while I'm out running on the side of the road), "Cyndi, do not just blog about all the good stuff along your way day in and day out. I know you. You HAVE to blog about the hard things, the bad things, and the things that scare you. People want to hear that, too." Okay Gates. I can hear you even now telling me this again, except the journey is very different this time. We did not pick it. It picked us. God has written this story for us, and I'll translate it in my own words.....to you, as we move down the road. All of it. Being vulnerable is not my forte. But for you, Gates, I'll make sure all the hards, all the struggles, and all the crying will be well reported right here. You're welcome. 

Truthpaste is not easy to put back in once you have squeezed it out

Speaking of crying, the truth is I've been crying off and on the day before we are to leave. I'm grieving leaving behind what we love, I'm gutted at the thought of watching David go through what may be the hardest thing he's ever tackled. I wish I could go through it instead, and that we could trade places. Can we please. I'm crying because the farm animals will wonder where we've gone. I'm crying because I don't want David to hurt. I'm crying because I can, and I need to. The good news is that when I awake in the morning, I will be stronger for allowing myself to grieve. I wrote that permission slip first thing this morning. Cry yes. All you want. It helps me to not hold onto it, and let it pass through me. Dear Me: You've been through a lot. I know it's been hard. Stay strong. I'm proud of who you are. Try not to stray from your path. Everything I'm praying for is on it's way. Everything will be okay. It really will. Signed, Me

I meant to do that

Now with the crying behind me, I'm back on track. The detour to CryTown helps realign me. As I have the car packed, the farm arrangements made, and while we make our way to Houston - just know - we are taking you all with us. Hope, faith, support and love will see us to the end of this journey, but first, we will begin it with our cups full. Our souls are inspired by those who have gone before us to complete this same journey to cancer island. I look forward to sharing the ups and downs (Gates) with you. The foundation is repaired. There's no water leaks. I've counted my chickens. The mini horses are boarded, the sheep are safe, the chickens will ask for treats from another caregiver for awhile, and we are on our way. We are not starting from scratch, we are starting from limited experience and can't wait to learn and grow more every day. I've stopped being afraid of what could go wrong and excited about what can go right. Our faith is strong. 

Namaste

I know you already know that MDA has a million study programs. I’m actually in a study for polycythemia vera. And now, David has joined one for the Head and Neck cancer department. It’s called Yoga Therapy. Yep, who knew! It’s a real thing there and we are now enrolled. It’s unexpectedly complicated because there’s 3 different groups, one of which he/we will be in, that’s undetermined at this point. The basis for each group seems to depend on several factors based on the results of a very long (baseline) survey of extremely emotional and physical personal information given by all participants (including caregivers). Oh, and don’t forget the time results of a 6 minute walk. All this information is fed into a algorithm that’s held in the secret Yoga Therapy Study vault and the groups are chosen. A bonus of this study is that it’s for the patient AND their caregiver to see the effects yoga has on cancer patients currently in treatment. They are measuring the (hopefully positive) effects that yoga has in regards to pain, recovery and emotional well being. I have a yoga mat, but imagine we’ll be getting David one very soon. The fact that his first cancer-based study he joins is a yoga one is both ironic and fascinating to me. I’m a fan. Let’s get started please. David on the other hand, well, we’ll wait and see. There’s no bbq or fishing cancer-based studies, and that’s unfortunate for him. 

Turtle Wins The Race

What I’ve failed to mention is the logistics of moving your personal belongings, needed items, and work equipment all 5 hours away and what that looks like. Firstly, it looks like that truck next to you on the road thats moving their family to a different house or apartment. Yep, we’re that truck. All janky with misc household items like the vital coffee maker, the unappreciated humidifier, the unusual dog-running cart/stroller, and a random wedge pillow amongst all the other taken-for-granted things we use day to day. David did mention if he could only bring 2 things it would be 1) our good attitudes and 2) our debit cards.  Maybe we should have just done that. 

Our truck is a reptilian lovers dream. It’s our very own turtle, as the bed of the truck is covered (luckily!) with all our vital life-lines and components just underneath. The heart of our life is in the bed of the truck. Packed tight and snug are all the personal and work things along with so many things we thought we could not live without for 7 weeks. All this, despite the fact I’ll (we’ll) be going home on weekends here and there. We know we brought too much. For sure. The apartment we are renting has lots of things already there. What I can say in my defense is that my pantry, my fridge, my closet and other spaces were all edited in this process. The Home Edit would be proud. I ended up cleaning out so many different spaces in my home, reorganizing and donating items that no longer serve me. It’s been a cathartic time, and although half the things in my truck I may not need in Houston, I’ve “cleaned up” a lot of my life just preparing for this temporary (TDY as we used to call it) move. Another added bonus during our stay on cancer island. 

Wait, before you go, can we get an update please

Of course, let's see..... I got the covid vaccine. I didn't grow an extra limb or anything.

We told Brooks ‘See You Later’ this past weekend.  

Gonna miss the cutie patootie

Brooks is in the yellow outfit, making friends and doing new things at daycare now. Let’s just say that mom and dad have reported that he’s sleeping better at night now.

The ponies are doing wonderful! They have grown their winter coat long and beautiful, and are currently boarded at our farriers place. 🤩 

My sister, Sheryl and her sweet granddaughter, Savannah, along with their entire family are supporting us over there 🙏

The Littles, Maybe and Sugar are coming with us to Houston. 

As we travel through rain and snow on our way, I am reminded of how comfortable we are in doing so. With God shining His light through the cold and wet conditions, He will see us there. He will see us through it all. 

May the light in me honor the bright and loving light in you,

Cyndi