Day 19, 20 and 21 Half Way Mark

 

Thanks Kim and Brooke!

It's hard to believe that by the end of Feburary, we are likely to be back home and moving on to a new chapter. It provides me a renewed sense of what we are doing now, to know that this moment is not how all the rest-of -our-moments will be. The self awareness in this brings about reflection, that although impactful, this timeframe we are in now is but one of a thousand journeys in our lives. We have absolutely needed (and consumed like a kid in a candy shop) all the support and love, and will continue to do so to see us through this. We have embraced the love and support of others, as never before, and have learned that we could be better at doing this for others, in the future. It lights a flame inside us to be more cognizant of the struggles of those around us. Just one of the many, many lessons we are learning from this chapter. 

It's not all about us

I woke up today knowing that I'm able to raise my head and look up and all around me, farther than the apartment, past the treatment appointments and the caregiving. I see all the life happening around me. When David comes home from his radiation and chemo sessions, I have noticed a couple of things. First, he's very interested in the other people seeking treatment there, and strikes up conversations with them. He asks how they are that day. He walks in the door, and tells me of these conversations he has, on a daily basis, with other cancer patients at MDA. He talks about their own journey, how they are doing and I realize that him seeing familiar faces each day brings about comfort. Secondly, he highlights who the employees were that day, typically by name, and if they were busy or having a good day (or not). He talks about what happens if one of the radiation machines are down, and what that means to the crew - and patients. He himself prefers one of the machines to the other (Versa 2 vs Versa 1), and when the Radiation Machine Versa 2 is down, that change affects him, although in a small way, it changes things up that day. What I found is in cancer treatments, you tend to like the same people doing the same things on the same machine because it makes you feel like there's consistency in the treatment. Whether or not this is true, doesn't matter. As the treatment is probably just fine with changes in staff and machines, but when the results can be life or death, it's easy to think we know what is best - or at least what feels best to us. 

David notices how the MDA employees really have to work in overdrive to get everyone taken care of when one of the radiation machines are down. He's watching and observing the employees, and wondering how they are doing that day. He also knows when to keep his mouth quiet when tensions are high and everyone is busy. What I do know is that he keeps a list on the fridge of the names of the employees and what gift card he's going to get for them - when he's all done - to say Thank You. He's watches the other patients come for their last day of treatment, often in a wheelchair or walking carefully/slowly up to Ring The Bell, as it's coined. Because when it's your last day for radiation treatment, you get to walk over and ring the bell which announces to everyone that you're done with your last treatment. Everyone hoots and hollers and congratulates the patient. It's an exciting day, for sure, for everyone there. David watches them ring the bell, and has already planned on how he's going to ring the bell......when it's his turn. I wish I could be there for that, I really do. 

The scarf is from Aaron, and was knitted from
the wool of his alpacas. 

What is strength, really

During this time in our lives, we both are hanging on tight. It's hard, it's scary, and we each manage it differently, but yet very much the same. It's hard to go to sleep at night because both our monkey minds create new scenarios to think about, surprisingly most of which have nothing to do with what we are dealing with. It's easy to get lost in our minds instead of being rooted in our being. As I've mentioned, prayer and breathe assist me with calming my mind to bring about restful sleep. David is still tweaking what works best for him, in regards to sleep. It's the hardest time of the day, in difficult times and situations, when night falls and all the external stimulus quiets down, and it's just you and the dark. Me in the dark with my messy mind. That's dangerous, and if let unattended, can steal much needed rest and peace from you. As we use our self-awareness to talk about this phenomenon, we each express what's happening, and how we can try new tactics to overcome it. We're trying, but as this train moves down the tracks quickly, and it brings about very fluid feelings and thoughts. Just when you think you have it under "control", that's when new developments occur. 

Speaking of

After 3 weeks of treatment, we have been informed (at this moment) that David has 3 more weeks of treatment (instead of 4 more weeks). Granted, this could change, but it's time to celebrate being half way through. No bell to ring yet though. Just new and continuing symptoms, adjustments in the mind to make, and acceptance of new side effects. An example? Uh, let's see, so many. Like adjusting to no taste and smell. Like adjusting to feeling bad all the time. Adapting to different medications and so many medications to take. Dealing with things you've never had trouble with in you life prior, like constipation and non-stop sour stomach. The feeling of 'you can never drink enough', and you probably can't. Resting 24/7. Remember all those questions at the beginning of our journey here at MDA, that we knew had a reason for asking, yep, we're there. Sleep, yeah not as good as before. Doing things? Well, that's become more difficult for David, as he feels bad much of the time. All those questions in the surveys that we take - are for a reason. They are seeing when "you" hit that point. And we will begin to answer those questions differently as we move through these next 3 weeks.

In the meantime, the uncertainty continues. Let's see, wonder when the bloody noses will start. They said it will. The pounding headaches, yes, can check that one off right now. I've now made a shift in my association of what strength is for us, in this moment. Strength has always included moving through the struggles with tears and smiles. We still do that, actually, because we find humor in most everything that is happening. We laugh alot at what the body can - and will do - unexpectedly. My shift in perspective regarding strength is that I'm able to speak about what the struggles are in this process, and talk about it rather than suffer in silence. There's no need for us to smile through the tears when we really want to be brave and speak our truth. That's the strength we have now. We will talk about the hurt and difficult moments, all while we be brave at the same time. Oddly, the struggle of this happens to also be the most beautiful thing to experience. We are manifesting a big miracle right now. By welcoming the abundance of it all - good and bad - we are living a miraculous life. We expect good things, and will receive more good things. We are grateful, and yearn to be even more grateful for the things to come. It's okay to expect more - and we do expect more. Some of those things will be tough things and others will be blessings. We invite them all to join us, and will embrace what the good Lord brings us. 

Weekend News Update

While David rested and recouped from his week, I made my way to Gunter. Typically, I leave early Sat morning, and come back later Sunday night. It's Go, Man, Go while I'm here. Although very mundane things, I enjoy replenishing the dog, cat and chicken feed bins. I start up the 68 Chevy, the mowers and make sure they don't stay stagnate for too long. I usually always have a burn pile - small or large depending on what I have to burn. I fluff the barn, although not near as much as I used to because Angela and Paul are rocking the Barn Maid service they provide. I do many of the same things that you might do on weekends. We are doing things and grateful for it. 

Oh, but it even gets more exciting. I pick up dog poo in the yard, and I also happened to clean out the inside fridge from top to bottom on this trip. It's just about empty, and is like a brand new fridge. I spend time with all the animals. I clean out the inside of the coops and put fresh bedding in them. I get the egg situation straightened out, by taking old cartons from the fridge (people often times bring their own egg cartons) and organizing what's left in there. I gather the things we need from the house to take back. I sleep in my own bed. I go for a run on country roads. I just do things around here, as there never seems to be a shortage of things to do. 

This time though, I did get my second covid vaccine on Saturday in Dallas. It had been scheduled since my first covid shot, and I didn't want to miss the second one. I'm feeling pretty good afterwards. It's the usual sore arm and wonky feeling, but nothing major. 

Upon entering Dallas early Saturday morning, I picked up Tula (Lauren's dog) to give her a mini vaca on the farm this weekend. AND, I could not resist holding Brooks!  

Sweet thing 

Brooks is holding his head steady and can now face outwards in his carrier. 

He's watching everything around him. He's pure joy. As Lauren and Ryan get ready to move to a house in Fort Worth in a couple of weeks, they are packing up - and if David is up to it, I'll head back to the Dallas area to watch Brooks and Tula while they move on Feb 13th. We'll see how things are going then. It's hard to say right now.

David did some rock painting recently 

Chicken Love

As you know, we lost 2 chickens on the farm this past week, and Love Bug passed away as well. So, 3 total. I did an official count when all the chickens were in bed last night, and counted 46 total. I'll take that. 

Carlos (silkie rooster) is doing well with his 8 girls in the Little Girl Area. None of the hens are sitting on eggs yet or have gone broody, but with time they likely will. They are honkering down in this one house all together with this strong north wind this weekend. It's amazing how they can all fit in there! 

They must have a Zoom meeting coming up

I can't believe they all fit in here.
They really do have a regular coop.

Sorry about the poor video quality. My video option isn’t wanting to work today. I’m guessing user error.

More good news is that Winston is doing wonderful. He loves it when Tula visits as those two really like each other. Old vs young. Winston can't really run around too much, but he does enjoy rolling around in the grass and playing with Tula like that. Some have asked if he's the culprit for the chicken incidents this last week. I'm thinking no. But, I did put a barn cam in the front window so I can watch his activity during the week in the yard. You know, just in case. But I really don't think he did it. 

Winston (left) whose favorite position is lying down

Levi and Whisper are doing their guard dog thing, and the donkeys are living a grand life with a round bale of hay and lots of treats from the visitors who come to our property while we are away. 

Mama and Papa Donkey are the couple I aspire to be

Levi checking things out as usual 

Holding hope tight

We are gearing up for what this week brings. I imagine the week will start off with a shit-storm of side effects, reckoning with the mental and physical side of it, which means a fight to keep sanity through it all. David and I do our fair share of laughing, and our fair share of staring at each other, knowing what the other one is thinking. If I could magically hit the fast-forward button for the next 3 weeks, I would in a second. Yet, what I need to do is buckle in for the next part of this ride on cancer island. Cancer sucks, I don't think anyone disputes that. I just keep putting one foot in front of the other, as will David. This is what will see us through, along with our friends and family cheering from the sidelines. 

Hugs to you all,

Cyndi

We SO appreciate this. Thank you Matt and Sarah ❤️

Day 19

 

It’s that time again, when I awaken early in the morning, in the still of the darkness and get in the car to travel back to Gunter. This weekend, David will stay in Houston as he’s not up to making the trip. He has his medications laid out, his food ready, and I am imagine that he will rest and sleep the weekend away, as his body needs just that.

I am heading down I45 towards the Dallas area to not only go home and check on the farm, but to get my second Covid vaccine. I’ll also stock the farm of all the feed and things needed for the next couple weeks. 

And even though David has all the things that he needs back in Houston, my heart yearns that I’m leaving him there for 2 days. We actually worry about the other more than we do ourselves, I think. That seems to be one of the many aspects of our marriage that we hold dear. 

And what has become my normal, I’ll post a blog for Friday Saturday and Sunday on Sunday night. We will see what the weekend brings, and enjoy the time we are given. 

Blessings,

Cyndi

Day 18 Breaking down

 

Breaking Bad

Yep, it's about that time now when all the building blocks of the cancer treatments are heavy, changing shape and wreaking havoc. It's just going to happen and there's no getting around it. And it's time. It's been time, but it's becoming easier to say it now. There's so many emotional (and physical) cycles a person goes through in this scenario. We have both circled back around to the types of feelings we had a few weeks ago. From the beginning, when we felt like something big was about to happen to us and the chaos inside you bubbles up. That died down as we begin to adapt and adjust. Now, with more bumps in the road, these same feelings arise again. More negative side effects of treatment are showing up and more uncertainty of what that will bring, which brings about the funny feeling in your tummy again, like when you were nervous about your first piano recital and thought you might actually fall off the stage. It's not awful, but we both feel the bubbling of the emotions and uncertainty. That's when the power of positivity is best served. 

I've discovered I'm finding ways to comfort myself without overthinking how to comfort myself. I started a home yoga practice, even just 30 minutes a day can change the lens through which I see. I like to light a candle in the morning, play Ambrosia on Pandora and do a full body scan of myself. How am I feeling? How's my mental health today? Then, I'm needing to check in on David more and more, as that's my job, too. He's not able to be as attentive to his needs as he was before, and I need to pick up those pieces as they show up more and more. I'll be doing a full scan on his capacities -  as well as my own. The team needs to stay a team, and that's what this next few weeks brings us. We have the opportunity to discover new ways to communicate, facilitate appts and stay in tune with (in particular) what David's needs are. What we do every day makes a difference in what tomorrow brings. Run the tangents and stay ahead of the curve. Got it. Normally, all these thoughts stay in people's minds......I happen to enjoy writing down the development of it all, including these personal thoughts and feelings that arise as each day passes. It's not always pretty, but it's part of this journey.

The brave are always stubborn

I have also figured out David's secret for success thus far: humor - and stubbornness. Oh, and prayers, of course. I never knew stubbornness would come in so handy. I mean, we all know kanzer sucks. It's scary, but so much of the success is in our mind. And David is like a sumo wrestler whose not going down without a fight. The only reason he ever looks back, is so that he can see how far he's come. As the cancer treatments beat him up, his recipe of grit + grace remain his staple. 

Luckily, Cybil is always on stand-by to make potions in the nutribullet, and he has a pharmacy in his own bathroom with a personal pharmacist, and a comfy bed with a wedge pillow. He has friends and family to lift him up, along with plenty of sunshine and warm weather in Houston. He's made new friends at school, I mean at MDA. And he's close to the halfway mark that lights a new-found fire under him to finish strong. It's day-by-day here, and we relish in it. 

Smell you later

David said his taste and smell are about 90% gone now. He'll ask what something taste like, "Is this salty to you?" Yes, I'll say, and he'll look back at the food, feeling sure I'm lying to him. He wants more salt on it, thinking that way, he can taste it. Chicken noodle soup's noodles are comforting to him. The pendulum has swung over to the texture rather than taste. The temperature of the food is more compelling than ever. And as his senses change, so does his food choices. He's finding satiety more and more difficult in regards to food. Our refridge looks like a grocery store exploded in it, because he wants this, no wait, I want that, no, not that, this. This madness will cease, I know it will, because it's a phase he's moving through to get to the acceptance of having no smell or taste. New coping skills will develop and they won't include impulse buying at the grocery store. We will eventually get to the point where he figures out what works for him, and what doesn't. It's a process. Right now though, he's scrambling to figure it out and I'm not talking about eggs. 

So how's H-Town

Houston's good. It's sunny, warm and mild. The humidity makes my hair perfect for witch hair. #FrizzCity  The Brays Bayou has a nice trail system next to it, along with trails all around it as well. There's also some nice trails around the Houston Zoo, golf course and Rice University. I've gotten lost a few times on them. I've also seen how the city rounds up the homeless that are trying to "camp" under the overpasses. Many of the overpasses correlated with the trail system have occupants. It's easy to run by many of them on a daily basis. The city does a pretty good job with the constant monitoring of these areas to keep it as safe as possible for the multitudes of people who desire to run, walk and bike on these trails, safely. It's a balance, that's for sure.

There's traffic, lots of food, a myriad of shopping choices, and covid all around. Hardly anyone is outside without a mask. I walk and run outdoors with a mask, as does most people do around here, anyway. The apartment complex is nice, and we've met a few neighbors. I doubt any of them have a chicken on their patio. 

So how's the chicken

Not so good. Turns out we won't be able to save her, as she has a neurological disease that is progressive. We are providing palliative care at this point. She's unable to leave her little fake-coop (cat carrier with pine shavings). It's very sad, as I only have a few frizzles left, and she's a sweetie. God will take her when it's her time. My heart feels for her. Chicken life can be so unfair to these fragile little mini dinosaurs. 

Unfortunately, it's been a bad week for chickens on the Graves Farm. First, I got a call on Tuesday evening from the caretaker (who comes morning and night) to feed all the animals, telling me that there's a chicken whose "dead" inside the barn. Whatttt? Firstly, how am I expecting her to take care of this situation. And secondly, I'm going to need to provide more compensation for chicken disposal services - plus the trauma of it all for her. Ugh. I felt so bad for the chicken AND for her. It was awful. Turns out, it was one of my cinnamon queens, and I'll probably never know what really happened to it.

At this point, I've now got 2 chicken issues, and I'm not at the farm to figure out what's going on. I've got one death reported, and one chicken on my patio whose not going to make it. I mean, what else could go wrong.

The next day. Ring, ring, ring. Hello? Oh, Hi Angela! What? You and Paul came to clean up the barn and check on things - and there's a dead half-eaten chicken in the yard? In my mind, I'm secretly hoping it's the same chicken and not another chicken. Wishful thinking, although that's horrible to say even that. It's another chicken deceased, a grey one this time and the difference is that something has tried to eat a part of it. Gross! Poor Angela and Paul, whose now in a position to figure out the chicken disposal process, too. What the what! My head is spinning and yet her voice sounds so organized and calm. I appreciated her assistance more than she'll ever know. Her and Paul got that all squared away. I have a feeling next time I need help with the barn, there will be no one raising their hands to volunteer - paid or not paid. 

Now, after I've talked to two kind, sweet human beings who are just trying to help us out - all within 24 hours of each other - they are now having to dispose of the bodies. I'm beside myself. It's in no way shape or form their fault that the chickens are dying. They just are, and I'm not there to figure it all out. I want to thank my caretaker AND Angela and Paul for doing a deed that is way above and beyond what anyone ever expected. I'm so sorry you had to find it out on your own, at the farm. This has been the ultimate gift (to me from them) Angela and Paul to take care of this situation for me - and to keep close watch on what's going on around the farm. I'll be there first thing Saturday morning, but until then, they are my eyes and ears. Thank you SO much. How can I ever repay them. 

Yesterday is gone

Don't let your yesterday take up too much of your tomorrow. I have a magnet on my fridge at home that reminds me of this daily. I put this advice to use yesterday, as I tried hard to not incessantly circle in the uncontrollable things happening at the farm. I did sleep last night, but only after a very long prayer included "please, please be with the farm, the chickens, the dogs, the donkeys and the people who are looking over it all".  I awoke this morning knowing that prayer - and breathe - are the two mainstays for my emotional well being. I'm instantly calmed once I pray and breathe. 

Praying and breathing helps me to embrace a contemplative life by "not-doing". Not swirling in the worry and emotions that are not beneficial to life. Worrying about the chickens is not going to make anything better. I either need to 1) Act On It or, 2) Let It Go. So, I let it go, until I can get there to act on it. Chapter Two in the book, Radical Optimism tells me the most important thing in initiating a contemplative attitude toward life is being still and open. The author compares this to tension in your mind bringing about tension in your muscles. That's fair, it makes sense and I already know that, I think. Or do I. While Chapter One addressed Leisure, Chapter Two addresses Stillness. Perfect. I loved all the words about this in this chapter. Relaxing the body, keep the body still, utilizing silence that can bring us to deeper levels of reality. I'm pretty sure this is why I adore yoga so much. It does all these things, and moves your body at the same time. 

I'm going to close with one of the last paragraphs in this chapter because it's what I needed to hear today and every day:     (besides, of course, Just What The Doctor Ordered daily notes Rx#413)

"So let us take care each day to attend to relaxing, letting go, quieting, being still. Let the body relax, give it exercise and rest: let the desires relax, let the insistence on having our own way relax. We don't need to tense ourselves up for this or against that. We don't have to try to correct, or even to regret, a multitude of faults. Just sit down near Jesus and absorb His peaceful presence. Observe how the peace in Him comes from having no personal preference tensions and from having all the dynamisms of His soul well ordered. That's how He can be both peaceful and powerful."

Trying for stayedness and quietness in this messy mind of mine,

Cyndi

A huge shout-out to Kim and Brooke for the most awesome care package! The time and effort it took to put that together warmed our hearts, and we have evidence (ALL the treats and fun things!) all over the apartment of the love and support from you both. Thank you from the bottom of our hearts! 💕💖💓

Let me give you a small glimmer into the life that is us, here in Houston. Please do not read on if blood makes you woozy.

A little history first: 

That’s the spot

David has a little spot on his nose that comes and goes. Mostly comes, rarely goes. He's seen the dermatologist about it and had it "laser-ed" previously. I happen to have skin cancer, and have never had a owie laser-ed, so I'm not really sure what that's all about. 

I digress. Owie on the nose. Then the radiation treatments started and about 2 weeks in, his owie is starting to bleed because it's right in the cross hairs of being hit hard, too. 

Fast forward to a few days ago when he bumped the scab off with his hand and blood started quirting out like a fire hose. He got that under control and was putting aquaphor, ointments and creams on his face to help with the radiation skin burns and keep this owie under control - or at least try. 

Then, here I was TODAY, minding my own business, working at the kitchen table and I hear the bedroom door open. David comes walking out all cheery and happy from his nap and says, "Hi! What cha doing?!"

First, my face was like this:

All while looking at his face, like this:

I am speechless and he's marching around like everything is fine. "David", I say, "Are you okay?" and I can't take my eyes off him. 

It takes my mind a few seconds to realize he has NO idea what's on his face. 

I say, "What's that on your face?!" and he says "Ointment". No, I don't think so, sweetie.

As I grab his hand and have him look in a mirror, he's now just as shocked as I am. What The What!?

It's then we both realize that while he was napping/sleeping, the scab from his owie had come off and bled on his face, and drizzled down his neck. He woke up and wiped it all around like it he was spreading the ointment around on his face, making his gothic makeup even worse than it was. Just laying in a dark room spreading blood around his face and neck, rubbing in the 'ointment'. Then, coming out the room to scare the ever lovin $hit out of me. Can I give up now? Ugh. I can only imagine what's next. I gotta go do more yoga. Peace out. God, please help me. 

Day 17 Time to share

Take one daily 

As we approach mid-treatment time, we have been blessed with family and friends gifting us with wonderful treats of dinner's out, Uber Eats, care packages FULL of amazing and thought-out gifts and useful oncological lotions and potions, real fruit arrangements, and so many well wishes from everyone. The calls, the texts, and checking in on us is so very much appreciated. As always dear friends, our deepest gratitude for standing by us through our journey. Words will never be able to express our love and appreciation for YOU being there. We are honored.

It's about this time of our journey to turn the spotlight from ourselves, and shine it on other cancer survivors who have/had Head and Neck cancers, who are not only thriving afterwards but shining bright. I'd like to share their stories today. I do not know them, but know they have also blogged and posted their own stories. I find myself consumed in their words and thoughts. We are all so different, yet the same, and their stories made me smile. 

Valerie’s Story

Living My Life

To recap my story (published in the SPOHNC newsletter, Summer 2005) during the Christmas season of 1998, whilst decking the halls, and hanging the balls, I felt an olive sized lump in my neck. For the next three months, as I came down with various infections, four different ENT doctors misdiagnosed me. But the ever-present lump made me nervous, and I finally saw an ENT surgeon, specializing in Head & Neck diseases. After a biopsy he told me, what I never expected to hear” “I’m sorry, but you have stage III, squamous cell carcinoma of the right tonsil”--Whaaaaat! How could that be? I didn’t smoke, or drink.

The novel writers clichés about going numb, actually exists. After the word cancer, I did not hear another word my surgeon said. He prescribed two surgeries, then radiation. Within a week I was admitted for my first surgery, which was a radical tonsillectomy, including half of my palette. Painful as it was, he wasn’t finished with me. Ten days later, I was readmitted for a neck dissection. The admitting lady said, ‘”Haven’t I seen you before?” I said, “Yes, I was here for surgery ten days ago, and I liked it so much I came back for more!” Next, I had my radiation-field teeth extracted. After six weeks of recuperation, and feeling better, I started radiation. Fourteen years ago, the more sophisticated technology of today did not exist. They strapped me on a table, tattooed me, and radiated everything within a hundred miles around my head.

Head & neck cancer radiation is daunting, to say the least. Unlike other parts of your body, it severely affects your essential daily luxuries, like eating, breathing, sleeping, etc. There’s supposed to be about a two-week grace period before you feel the side effects from radiation. However, I’m such a petite, dainty flower that after the first few days, I started to feel some mild symptoms. And, it was downhill from there. My radiation schedule was interrupted twice. I became dehydrated because I couldn’t even swallow water, and needed re-hydrating” like a dried mushroom. Later, I developed a blood clot in my leg, probably associated with inactivity and the steroids prescribed to address the inflammation. The cessation of treatment made me nervous, but my doctor assured me that it would not affect eradication of the tumor. I point these things out not to scare you, because everyone tolerates radiation differently, but to illustrate the need to be aware of what your body is telling you, and to be sure to inform your doctors of any problems.

Guided imagery helped me with relaxation, and every day, when the radiation beams were shooting into me, I imagined a Star Trek machine zapping the cancer cells until they exploded. I know that attitude, and humor is so important in life and recovery. Going through treatment, I watched all the funny old sitcoms, and movies I could find. I was too fatigued to laugh out loud, but I knew that laughing in my mind was just as therapeutic.

The popular phrase “Radiation is the gift that keeps on giving” is so true. As soon as they finish treatment, patients expect that they will bounce back to normal. Unfortunately, it’s a slow recovery. For about three months after finishing treatment, I was down for the count with fatigue, burning tissues, and eating problems. With a weight loss of 23 pounds, I was indeed a shadow of my former self. At that time, feeding tubes were not standard, and my doctor did not like the possible infections associated with them. He also knew that I was well-informed about the importance of healthy nutrition.

It seemed as though all of a sudden, from one week to the next, the fatigue lifted like a veil, and I gained back most of my old energy. I started exercising again, and although I grew stronger, that’s when I lost the last six pounds, because my throat still hurt, and I wasn’t eating enough calories to gain. I lived on my neighbor’s lovely organic eggs, any moist, pureed food I could get down, and my own recipe for nutrition-dense milkshakes. (Page 11 in the SPOHNC cookbook)

I think I continued to heal slowly for about four years. I still do not have the normal saliva I had before radiation, however there are prescriptions, and over the counter products that do help with that. Acupuncture for dry mouth helped me tremendously. Dental issues were not a problem until recently, when my teeth started to chip and break. Occasional neck stiffness bugs me, and I sometimes have trouble swallowing, but overall the “new normal” makes for a happy life. I have become “The Buffet Queen”. I eat anything that’s not nailed down, with the exception of dry foods. I gained back ten pounds, and have the girlish figure I had in my twenties(except for gravity, but that’s another sad story).

Going through treatment I vowed that if I lived through it, I would help those having to endure the same journey, so, in 2000, I started the San Diego Chapter of SPOHNC. My group started small, and sputtered along until my efforts at spreading the word started getting results. I ran ads in everything, exhibited at every cancer-related event I could get to, designed and made SPOHNC brochures for the local chapter, and ran around San Diego distributing to anyone, who would listen. We now meet every first Saturday at noon. The only oral, head and neck cancer support group in San Diego is now thriving.

I run an upbeat support group. I start every meeting with a clean joke. One time I forgot to tell a joke, and someone said, “Hey, you can’t start yet. You haven’t told one of your terrible jokes.” Laughter may not be the best medicine, but it sure comes close. I tease new patients, “Geesh, you guys today have it easy. When I went through treatment, I had no mask, no feeding tube, no therapy, no support group.”

My regulars chime in and say, “Yeah, yeah, we know, and you had to walk ten miles each way in the San Diego snow to get to treatment!” Even people, who are anxious, and in pain, laugh with us.
As well as educating patients, I book relevant speakers for the group. Most professionals I approach are generous in taking time from their busy schedules to come and talk to us. We have had nurses, ENT doctors, radiation/oncologists, cyber knife experts, social workers, patient advocates, therapists, psychologists, dietitians, nutritionists, life coaches, acupuncturist, etc. I recently sent a translated version of a SPOHNC newsletter to a prominent medical contact in Mexico.

I am a volunteer for SPOHNC’s National Survivor Volunteer Network, which matches survivors with anyone needing help or advice. It’s very rewarding to talk with someone who is nervous anxious, or downright scared, and encourage them through the long, dark tunnel of treatment, and see them come out at the other end, hopefully smiling. I tell everyone the Big C stands not for cancer but for COURAGE.

Of course, there are dark moments, when sadly we lose someone. That’s very hard, and brings home the gift of being a survivor. Treatment modalities for oral, head and neck cancer have come a long way, and due to the rise in oral, head and neck cancer patients, more research is being done. The future holds the promise of hope, for oral, head and neck cancer patients.

I wish you all well.

And then there's......

Garry Fielding’s Story

Faith, Family, and The Desire to Heal

So how did I get here? Early in 2009, I had not too long before celebrated my 30th birthday with friends and family. I began having pain in my upper teeth that radiated through my face. Thinking that I might have a cavity or something, I went to see my dentist. He told me that I had a sinus infection and that I should take some antibiotics. He also said that my gums seemed a little soft which was probably nothing but that I should follow up on it. I decided to contact my primary care physician for a follow up and he essentially said the same thing, “sinus infection.” He prescribed two different types of antibiotics and sent me on my way.

Now I didn’t think there was anything strange about any of this because I had at least one sinus infection a year and this was a normal thing for me. But this time was different…the pain eventually lessened, but did not completely go away. In addition to the dull pain, I noticed a lump in the upper part of my gums. I went back to the PCP and he suggested that I have a CT Scan. I still remember sitting in that room waiting for my scans not knowing that my life was about to change forever. After completing the CT and the doctor getting the results, he wanted me to immediately see an ENT specialist. He couldn’t tell me much except that he had some concerns about what he saw in the CT scan and I needed to see a specialist. I met with an ENT and he let me know that my scans showed my right maxillary sinus completely full of some mass. He wasn’t sure exactly what but it was clear that it could be serious. He ordered a surgical biopsy to find out more details.

On Thursday June 4th, 2009, I had a surgical biopsy done on my right and left maxillary sinuses. After doing the surgery, the surgeon felt pretty confident that it was something other than cancer. At least that was his initial response. We waited through the weekend to get the actual results but were pretty positive because of the optimism of the doctor.

On Monday, June 8th, my life changed forever. The doctor called my wife with horrible news. I will never forget that day standing in the middle of a department store seeing my wife mouth the words “cancer” to me. I was in shock; I took the phone from her so I could talk to the doctor myself. He told me that they found squamous cell cancer cells in my right maxillary sinus. The cancer was so aggressive that it had gone through my palate and started to protrude out of my gums. We were so confused and distraught. We left everything in the store, grabbed our 2 year old and went to the car. We just sat in the parking lot of that department store, crying. That’s all we could do in that moment.

All I was thinking was how could I, a healthy non-smoking 30 year old male in good physical shape, have cancer? And sinus cancer at that – something I had never even heard of.

After we collected ourselves, we immediately called family and friends to let them know what was going on. Some of our closest friends came over within hours just to sit and pray with us. Although I was scared and unsure of what the future would bring, there was this small bit of internal faith that I had, that told me everything was going to be ok and that I was going to get through this. I flash backed to a guy I heard on the radio earlier that year who was in the sports world and fighting cancer. I remember thinking; wow this guy is so positive and upbeat about his experience even though it’s extremely hard. I said to myself, if I ever had to go through something like that, that’s how I would want to do it. Little did I know, that thought was going to be challenged the same year.

Fast forward to treatment. After meeting with a series of doctors, I landed with the right team that I needed at that time. They came up with a plan of treatment and we moved forward. I had major surgery – a right maxillectomy and neck dissection to remove the cancer and any possible impacted lymph nodes. Then all within the same surgery they did a fibula free flap replacement using the bone in my leg to craft a new jawbone and tissue from my leg to create a new palate. I was in surgery for almost 12 hours! After the surgery I endured 3 months of chemo and radiation. I had two different types of chemo weekly and radiation every weekday. I continued the treatment until I could no longer carry on because the chemo was so strong that it was causing me to lose my hearing. My doctors wanted me to go for the strongest course of treatment because I was young and they wanted to be sure there was no cancer remaining in my body.

The treatment was one of the hardest things I’ve ever done in my life. I lost my sense of taste for a while, I had sores and breakouts in my mouth, throat and on my face. I could no longer eat because of the pain and had to be put on a feeding tube for nutrition. I was tired all the time and just felt bad most of the time. Because of the surgery, I lost the feeling in my upper lip and part of my face. My nose would drain sometimes and I didn’t even know it. I was often embarrassed about my appearance but I was determined that I would not stop living my life. So, I went on with my family and my life as if things were normal even though I knew I looked horrible.

As I was going through all of this, my beautiful wife was busy trying to take care of me, a two-year-old and keep herself healthy given that she was pregnant. She started to have complications while I was going through my treatments. At one time, we were both in the hospital at the same time on different sides of town.

What got me through all of this? My faith, my desire to see my children grow up with a father, and the support of my family and friends. I’ve always had a strong sense of purpose and I just believed from beginning to end that there was more for me to do on this earth and it wasn’t my time yet. Despite what I felt I looked like, my wife was always there to love and encourage me, which really gave me strength. We had a lot of help from family, friends and church members to help us get through this. We couldn’t have done it without them.

Two weeks after my last treatment my wife gave birth to our second daughter, Zoe, which means life. I struggled getting back and forth to the hospital and taking care of her but I did it and I have not looked back since then.

What is life like now? Now I’m 8 years cancer free and my face has healed. I don’t look exactly like myself before cancer but it’s close. People are still shocked to hear how much I went through because they don’t see that in my face, which I think, is a good thing. My smile is distorted and I have a big indention in my cheek due to the missing tissue. I’ve tried a few cosmetic surgeries to improve the appearance and it has progressively gotten better but still not exactly where I want it. My biggest struggle today is the limited opening of my mouth (15 mm to be exact). It causes me issues with eating and replacing my missing tooth. Every dentist or prosthodontist I see struggles with helping me in this area.

Other than these cosmetic things, I’ve carried on with my life and do everything else that I want to do. I now have 3 beautiful daughters. I’ve progressed in my career in executive management and I’ve become a 1st degree black belt in Tae Kwan Do. All in all life is good and I am extremely grateful every year that I see.

My perspective is very different now; I never take time or my purpose for granted. I always try to remember that things could have gone the other way. If you ever doubt whether or not you can make it through the most difficult of circumstances, don’t doubt yourself, because through faith, you can.

Garry Fielding

As David moves through his own radiation and chemo, we are privileged to do so here at MDA. The outcomes (after the treatments are completed in late February) are certainly unknown and uncertain, but what we do know is that we blessed beyond our own belief, and trust in the good Lord that all will be as it is destined to be. His Will be done. We are here for it. All of it. 

He’s certainly trying

All good, all the time,

Cyndi

Day 16 Fortnight

 

We hit the fortnight point this past weekend, and started into the third week of what David calls his 'life test'. I wanted to ask him what happens if we have more than one 'life test', but I'll let that sleeping dog lie. Maybe this life test, as he calls it, is his litmus test for survivability, I'm not sure. I kind of like how he speaks of this 'life test' as a singular thing, and not something to be repeated. 

He awoke on this Tuesday morning to the usual "busy" day that a Tuesday brings. Labs at 7:30, radiation at 8:25 straight to chemo at 10:00 and them the finale of seeing Dr Rosenthal (radiation oncologist) at 11:30. Then, the rest of the day is his. What's different about today? That he didn't want to get out of bed? No, that’s normal. That he's not interested in breakfast? No, not that either. It was the words that came from his mouth, "I'm ready to go home now". I can see a big corner turned today, and it's a corner that turns straight into a wall. The sore throat creeping slowing up is taking a toll. The soreness of his neck, the tenderness in his mouth, the loss of taste and smell almost completely gone. The dryness of everything about him - from his colon to his skin to his nasal passages to everywhere in and on his body. The sour stomach and uncontrollable burps. It's becoming blurry about whether it's the chemo or radiation pulling the punches. He can sleep and rest all day, then sleep through the night without an issue. This all wears on the body whose just trying to rest and catch up with what's happening. I encourage drinking fluids first thing in the morning - a lot. Since he's not been drinking for hours while sleeping, therefore it's time to rise and drink, all while he's just trying to do his best to rise and shine. Sinus rinsing, mouth rinses and anything to hydrate body parts is a necessary part of his morning and daily ritual. 

At his weekly follow up appt with Dr Rosenthal today, he was given an A++ with how he's progressing. He also got some new meds like lidocaine mouth rinse, and gabapentin for the nerve pain he has (and that will increase). The radiation dept is ready for what each week brings. They know what's going to happen next like the back of their hand, and if you listen real close, you can pick out the nuggets as they speak. Its a game we could call lose, lose. No way around it, but through. And so we shall. They are pleasantly surprised at how well David's doing. Out of all the times David has called me 'leather and salt' when I'm pressing through cold, hard driving rain on the side of the road or pushing myself to my own personal edge (usually at my own choosing), I am now going to turn this table around and say, "Way to go, Mr Leather and Salt!". And that's a compliment, my friend. 

Keep Feeling Fascination

As The Human League sings oh-so-well, David keeps feeling fascination. There's a certain fascination he has with The Machine, as I like to call it, that mesmerizes David day in and day out. He talks about it like a new friend who is super cool. The Machine is the radiation equipment that he lays in each day. He gazes, not stares, up (gently, of course, so many rules) as The Machine fires away rays-of-light into him, all while taking different shapes and creating unusual forms that catch his eye. The curiosity of the opening and closing of the lens inside The Machine, directly above his face, is something that catches his eye every day (no pun intended). He wants me to know how fascinating it is, so badly, that he takes great pains in explaining each and every detail. As I listen, I see David's face light up, like he's giving me the directions to a goldmine that he's found. Intense is a good word. Yeah, intense. So in his effort to convey his fascination of The Machine, he presents photos so that I may better understand. 

I see you, and those blue rays you speak of

Before this all started, I had first noticed that David had becoming intrigued awhile back with the traffic light bulbs that often times burn out and make shapes inside the traffic light device itself. 

David would be creative with this one, 
like it’s a frog leg or something 

He'd comment on "while sitting at a light today, I noticed...." a smiley face, or a winking face, or a shape of some sort. It's almost like that friend who always see pictures in the clouds. Look! A bunny rabbit! But David sees shapes in traffic lights that have the burnt out red, yellow but mostly burnt out green bulbs. I'd never even noticed that before. But he does - every time. 

This one? I’m guessing it’s a sideways moon spooning another moon reading a book. I give up. 

Okay, back to The Machine. He's taken another photo so that I can see what he sees. Or better yet, we can see what he sees. The “windows” that open and shut allowing the rays to stream out. 

I think we can see the windows that open and close

Now we know, too. 

Grapple Group

There's a crew around here who continues to battle life, along with David, and they stand strong at 2 others. Well, 3 counting David.

Sugar - for the first time in weeks, I'm happy to announce she slept through the night. You'd think I was talking about a baby, but uh no. It seems like a silly thing, but to Sugar, night time is when the nightmare really starts. The apartment in Houston has proven to be a place that ignites fear in Sugar. I can only guess in her past life (prior to our adoption) had some similarities of those here in Houston. Either that, or the degree of change in her life here vs the farm, whichever it is, it has her on edge. David thinks Sugar is telling us a dog has been killed in this apartment and it's haunted or something. Grim, I know. But Sugar's been on the brink since we arrived, and finally last night, she slept through the night. And you know what's just as great? So did Brooks! I got a text from Lauren this morning that little Brooks slept from 7 pm - 4:30 am. So there were many well-rested beings this morning, including myself.

Can’t wait to hold this sweet baby

Next up, Love Bug - she is definitely in the Grapple Group. Her injured wing/leg issue is something I've decided to investigate further, as I've scheduled her a vet appt here in Houston for tomorrow. I'll be curious to see what they think is wrong with her. I still have her splint on her right lower let and foot, and she's actually able to get in and out of her little fake-coop pretty well. She's determined. If I take her splint off, her right foot curls up. So either way (splint or no splint) she's struggling. I'll at least find out if she has a fighting chance - or not. 

I’ve truly lost my chicken lady mind to bring 
a chicken to an apartment in Houston. 

Radical Optimism

We heard from multiple sources that the best outcome from cancer treatment is partially due to having a positive outlook. I've been blessed with a new book (thank you, Becky and Cindy!) titled Radical Optimism. As I began reading it, I quickly realized it's one of those books that require ones-self to read and re-read many of the sentences over and over to gain comprehension of the words written. Beatrice Bruteau is the author that gets to the core of spiritual awareness on a level that rivals with how Eckhart Tolle does in A New Earth. I absolutely love reading these kinds of books (although a podcast is nice too, to help simplify the complex sentences and bring it to a Cyndi-level of understanding). These books are challenging and complex, and I think part of the reason why these books are so special is that humans are not often living a contemplative life. It’s inspiring when someone comes along who can bring about a understanding of higher awareness to ones life. 

Chapter One hit home right away. It's explanation of ego-consciousness is touching. I, personally, have a compulsion to constantly figure out how to keep my ego in check, because it's so bossy. Beatrice defines ego-consciousness as that which judges everything in our experience according to whether it's good or bad for me as a private, separate individual, rather than according to whether it is good or bad in itself. Mic drop.

She goes on to say that when we carefully observe and understand "our memories and desires of the past and future" that we can get out of ego-consciousness, and stop thinking of ourself in terms of past and/or future. She writes that living in the past or future is fantasy, and that it is unrealistic. I had to reread this section several times, but was able to comprehend what she's saying it that the present moment is what we have. The here and now. We hear this all the time, Be In The Moment. Stay in the Moment You're In. What David and I have found with cancer is that this has become easier. Why? Because life became definitive, real quick. A few blogs back (pre this book) I had talked about our being in the Now. And that our Now is everything. Our future is unknown. This book stamps this for me. It even tells me that living in the past or future does not bring peace, as we often think it can. Please don't misunderstand though, that it's not to say we should never think of the past or future, but that we "shouldn't study it". Study it. That's a new way of saying dwell on it? I don't know, but it sure sounds like it. Don't study it. Hum. I'm marinating on that. David says, “Just don’t stare at it, gently gaze at it”. 

The end of Chapter 1 sums up much of her initial writing as, "We do by not doing and by undoing." Ugh. I don't know why I crave this type of book and awareness-seeking as I do, because it's hard for me. Yet, when I have breakthroughs of understanding - it becomes my reward for seeking out more in life than just what I already know.

Mr RayOfSunshine

After David's busy day, he comes home craving Chef Boyardee's beef ravioli. It's soft, it's comfort food (for him anyway) and he can have it because that's his business. Then, it's off to ZzzzTown. 

Luckily, the rest of the week is very straight forward. Radiation, Rest, Repeat. Slowly, step by step, he's getting through this litmus test of life.

Ta ta for now,

Cyndi

In His Words

MDA waterfall

Today, we'll hear from David. As he moves through this chapter of his life, we'll hear from him as he shares his experience from his body, mind and soul.

Can’t taste it right now, but he knows it’s yummy 

There is no way to express my gratitude for where I find myself today.

When I drive to MD Anderson each morning, I see the vastness of the city block sized buildings, the sky bridges from one enormous hospital area to another. 

The entire operation is a highly organized group of thousands of professionals focussed on their patients. Communications is what they are known for at MDA, and they have taken it to a stratospheric level of excellence! They make the patients the priority in everything they do and coordinate everything toward that end. That story is another blog and a half to come, but back to my appreciation for being here. 

1/2 of one of the sky bridges

As I walk into the building I see patients of every type. There are more types and stages of cancer than there are leaves on a tree. I see people with amputated limbs, horseshoe shaped scars from head surgeries, tumors of every size and color, indentations and cavities where healthy bones once were. All of them are being assisted out of their cars and into the hospital. In the hallways I see them pushed in wheelchairs by their caregivers, pushed in their hospital beds by nurses back to get radiation, and countless just sitting and waiting to be seen. Most of them are dozing, having briefly given in to the overwhelming fatigue that comes with their treatments. I am so lucky to still be up and ambulatory early on, but I see the future, and respect every one of them! They have come for the medicines, expertise, surgeries, therapies and most importantly, the hope they need.  

Every day I think how lucky I am to be here, to be fortunate enough to have doctors of this skill level, with state of the art equipment and so many people focussed on my needs. Before my first visit, I was already hearing the accolades of MDA. When my sinus surgeon gave me the news about my SNUC, he told me three hospitals that he would recommend. He laid them out as objectively as possible without preference. That is, until I said MDAnderson would be my choice. That’s when he said, that’s what he would pick for himself or his family. He went on to tell me that where you go initially for your cancer treatment is THE critical decision when trying to increase your chances of fighting cancer to a successful outcome.  This was reinforced my first day at MDA when riding up the elevator with a gentleman whose whole neck was swollen and wrapped in dressings. He told me that he had seen his doctors in New York and they had treated him initially for prostate cancer with surgery and radiation. He “recovered” only to have the cancer come back with a vengeance 11 months later. He said he was now here to see if he can hopefully be “cured” more permanently. He said how much he regretted not having come to Houston first. This was a casual two minute elevator conversation between complete strangers, with nothing in common but being cancer patients, looking for hope.

Welcome to day one! 

On day two, another patient struck up a conversation about his first treatments in Florida. Telling me that immediately after surgery his doctors suggested he get to MD Anderson to continue his treatments What, no three choices to pick from?? Regardless, we are all in the right place now. 

So the way MDA has embodied their care for their patients is to be their advocate. They schedule all the tests, all the specialists, the labs and follow-ups for the patient. I don’t have to call the DDS and make an appointment to get my teeth checked out, schedule a follow-up to get my radiation mouthpiece made, then schedule a third visit to get the final fitting. I’m not scheduling visits to the optometrist for my baseline review, or calling my oncologist to see when I can start my visits. Everything at MDA is under one hood, so to speak. They schedule everything from their central scheduling and notify patients on their online portal “MyChart”. All the surveys, questionnaires and forms are online. Changes to schedules and appointments are automated and updated continually. 

This makes everything for the patients simple. Results from tests are shared with all the physicians at once. All billing comes through one channel along with insurance, pre-authorizations and payments. Easy peasy!

In my first week I saw DDS Oncology, Radiological Oncologist, Hematologist, Chemotherapist, Patient Advocacy Representatives and my primary Oncologist Dr. Hanna (who actually is the one who “Wrote the book” on my rare cancer). 

Dr Hanna, Super Star

This would have taken me weeks to coordinate all the visits but MDA had everything done in  four days.

The second third and fourth reasons I’m so lucky to be where I am is that my cancer was found so early, tested thoroughly, and in the hands of superior doctors. It was just some congestion that would not clear up. Again fortunately or luckily, Cyndi works for a group of talented ENT doctors who got me in immediately to check things out! 

Handsome Dr Pahlavan

Dr Shane Pahlavan did my surgery, saw what was going on with my polyp, and had it sent for biopsy. It was such a rare cancer that he had them double then triple check the test results! It was a blessing that Dr. P had worked with Dr. Hanna when he was in training and did some of his residency at MDA. So Dr. Hanna helped train Dr. Pahlavan, whose ENT group hired my wife, who’s husband has a super rare cancer that just happens to be Dr. Hanna’s specialty. Coincidence...... uh... nope!

 

My fifth and most important reason I’m so lucky to be where I am is Cyndi. Cyndi has dedicated herself to taking care of me and help me through this test. I tease that I have my own personal nurse, but it’s no joke, she’s the real deal. We are working on communicating better about what we need, what we expect and how we want to live through this life test. Cyndi was diagnosed with Polycythemia Vera six months ago and had been wrestling with some of the symptoms for several years before she was officially “labeled” with her cancer (her cancer-versary was 8/20). Now she is taking care of me and I’m trying to figure out how to be prepared when it is my time to help her! As she says “You just don’t get it, until you get it.” Now that we both have it, we are finding our way together. We will spend our 30th wedding anniversary together at MDA on February 14th! How can I get any luckier than that?

The train about to hit me, or the light at the end
of the tunnel. Let’s go with the light.
Yes, definitely the light we are heading towards.