Patience

The pathway between persistence and patience and be murky and dense.

We lose focus of what it is we pursue grinding through daily monotonous doings that create a deep black hole where we dangle.  Finding the strength to break free from the hang-man’s noose is a powerful move indeed, if one can manage to grip from within.  Mastering the strength to muster through monotony is a master’s true triumph.

Life deserves our patience so that it may show us the very best of ourselves.

brown wooden bridge between lifeless tree under clear blue sky during day time

Do good, eat well, take care.
Much love,
ReJo

Still Here

It’s been awhile, I know. We are still here, both of us. Kicking through life with good days and bad days like everybody else on the planet. What else can we do, right? Give up the fight? Not a chance. We are both too stubborn for that. I’ve slacked off of my writing, I know, I can feel it in my bones, I miss it, but honestly I’ve been a bit depressed and decided to keep that to myself. However, when I realized my last post was in October, I shocked myself. Time certainly flies!! Not a whole lot to report on cancer these days. Remission. Maintenance. John got to take a little pause from treatment in October and November, Doc CEO suggested it since John’s chemo brain was kicking in pretty hard, and the trial protocol allows for a break. It was a nice hiatus, but after returning to the monthly maintenance therapy, we notice the chemo brain rekindled. No fun. So we ruminate, “How much longer can we muck around in the maintenance drug?” “What are the long-term affects?”  We know the chemo brain will decline once the drugs are out of his system.  Tricky thoughts – so we sit with them.

We did experience another kind of hospital visit though – just to mix it up a bit. John sold some drums to buy new power tools because we are renovating the garage (don’t ask why, but we are, we do that kinda stuff). John likes to build things. One Sunday had him in his workshop working new shelves, while I cooked breakfast. I usually ring the porch bell to let him know when it’s time to eat.  Taters are cooking in the skillet and I’m no where close to ringing the bell when I notice him quick stepping toward the house. Uh-oh!! He takes his jacket off outside and is hiding a hand. I figure he has cut himself, and he says, “I cut my finger.” “How bad?” I asked. “Not sure” he says, “I haven’t looked at it yet.” I grab a roll of paper towels and off to the bathroom we go. He releases his finger and sticks it under the running water.  We get our first look. YUK!! Nope, I can’t do nothing for that! Gotta turn off the taters and high tail it to the emergency room! They cleaned him up, gave him pain meds, a stitch and send us home. He now has a quarter inch gash on the nip of his left index finger. Thankfully, his drum stick doesn’t rest there and he is slowly, very slowly getting some feeling back. But, he may never get all of the feeling back. And the hits keep coming 🙂

On a much lighter and fun side of life. November took us to Texas to visit with the Whitehead tribe where we relished in big fun, great weather and not quite enough family hang time. Seems like there is never enough time to enjoy family when we are geographically challenged. Yet another thought we sit with. We visited Kentucky for Thanksgiving which brought about more family time, laughter and future planning. December and all the holiday activity was lively, uplifting and inspirational. We savored our love for each other, our family and friends. We adventured to Florida with my folks to help them get settled in their snow bird nest for the winter. We couldn’t have wished for a better trip. The weather was phenomenal, and we harvested the benefits of sunshine and warmer temperatures. Patsy came along too, and she loved walking the neighborhood every day taking in all the different smells and critters. We absorbed amazing sunsets over the lake, went to the beach where the ocean was rowdy, wild and beautiful, ate up delicious meals with family, climbed tangerine trees for juicy fruit, and truly enjoyed each and every moment. Awe, if only every day could be a vacation day! But, I guess they wouldn’t be as special if we experienced vacation every day (but I would like to give it a go sometime). We are grateful for vacation days, beautiful sunsets, love of family, security of employment, health, and the ability to still enjoy the beauty of life in every day responsibilities. It can be a struggle, yes, but if we seek, we can find beauty in the daily grind. For example, my tiny desk orchid, surrounded by florescent light and lawyers, she still blooms in beauty with only a sprinkling of water and love.

Do good, eat well, and take care my friends.
Much love and Happy 2019!!
ReJo

Tent Camping

Camping in nature and singing karaoke through an electronic microphone doesn’t really seem to go hand in hand if you ask me. Don’t folks know that sound travels twice as loud and twice as far when surrounded by water?

When John and I began dating, twelve-ish years ago, we really enjoyed tent camping. I have great memories of camping as a kid, seemed we always camped on the water because we are water people. Camping out in nature absolutely creates remarkable memories and experiences. But over the years camping has fallen by the wayside for me and John, and we hadn’t camped in a long, long time. But this summer we’ve been able to catch up on our camping a bit and rekindle some of the “romance” of sleeping outdoors. Mind you, we are twelve years older now and super comfortable in our bed under our lovely roof at home. But we couldn’t fight the desire to get back outside into wide open spaces to make more memories, discover new adventures, ignite our love for the outdoors and take the fresh evening air into our lungs.

Seeing as we have a boat now, we decided to boat-in camp for the first time ever, and that was surely a memorable adventure. Perusing the island for the perfect camp site, setting up camp, corking the wine for sunset happy hour, campfire hobo dinner, and a nice summer breeze was perfect, all the while listening to the sound of the lake lapping against the shore – very relaxed and happy were we. But, as we were winding down for a summer night of rest, long about 10:30pm we hear something that resembles music coming off the water. What the hell? Karaoke on the lake? Listening closer it sounds like Eastern Indian music. Yep, you got it – Eastern Indian karaoke! At first it was funny and we giggled, but well into the second hour it started to sound like cats being branded. Unfortunately, we were not alone in our begging of them to stop the madness. Along with other surrounding water campers, we screamed, honked our boat horns, flashed lights of SOS, whatever we thought might get the point across that enough was enough. It was the same song over and over and over again, think David Allan Coe’s “You Never Even Called Me By My Name” Eastern India style.  We hadn’t brought enough wine with us to drink until we passed out. The crazy twangy likeness to music noise pollution finally stopped around 2:00am. So much for a restful night’s sleep on the water. Needless to say, we can tack the boat-in camping adventure up to unforgettable memories.

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With that experience behind us, you’d think we’d sell the camping gear and hang it up, but no. We decided to try it again with the resolve to check out other lakes and rivers in our area where we can play with the boat, so off we go to Rock Island State Park, a little over an hour from home. We’ve heard great things about the park and decide to camp (again), familiarize ourselves with the area, get to know a place before hitching up the boat to take her to a new playground. We rise early on a Saturday morning, packed and ready to give tent camping another go. This time, we will drive around the area, get set up at camp (which is not on the water – bummer) and then hike a few trails around the river. It was a beautiful day, a lovely drive and easy to find the park and get settled in to our campsite. Our previous experiences in state park campgrounds is that they all provide a little privacy, but not Rock Island, so we were a bit disappointed in our neighbors being so close. But, the park is beautiful and offers many trails for hiking, both easy and strenuous. There is a plethora of waterfalls, pools of water, huge rocks, and interesting structures peppered in many of the trails. The surrounding rivers also offer many places to play on the boat, so that will be an adventure for the future.  We hiked a moderate trail that lead to a riverside beach, all total was about 3 miles and moderate in that you must be careful of the massive tree roots, and the inclines can be challenging to traverse. The following is my poetic description of our hike:

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The day was sun soaked with warmth
The forest cool with shadows of tall trees
Leaves hanging on yet dancing to the ground
Shedding their limbs to bare bark and sleep
Sharing the love of light and shadow
Between blue sky and mossy green floor
The light and dark support each other
Arranging the consistent sense of love
We honor Mother Nature in every breath
Her gifts of life recycled, nourished, blessed

We may never sell the camping gear because there is something very special about nature’s restoration of the soul. However we have a new necessity in the camping gear box – earplugs!

Do good, eat well, take care,
Love,
ReJo

Rebel Red

We have a small urban farm, approximately two acres with a good sized garden, loyal dog, and chickens. We learn more about tending this little piece of land every year. When we bought the place, I was so excited with the thought of having chickens because I remember eating fresh eggs as a youngster at my Granny’s house. The “fresh” food tasted so much better than the stuff from the store, plus it was fun to know where the food came from. We’d have to scoop the cream off the top of the milk before we drank it, make sure we washed the eggs before cooking with them, etc. The little things that are necessary when consuming truly fresh foods. So, yes, I was excited to have the space for chickens of my own, and we learned that they were pretty easy to tend. So we decided to give it a go. Come to find out, they are indeed easy to tend, fun to watch and the eggs are awesome. We eat as many eggs as we could possibly want, and share our abundance of eggs with family and friends. This aspect alone makes raising chickens even more fun because we get to see those great big smiles when we share the eggs. Win-win!

Chickens are definitely fun, funny and finicky. They have a tendency to contract weird diseases and illnesses. Who knew they could actually fall over and die when they first start to lay eggs? Evidently, egg laying is extremely stressful for a chicken until it becomes a daily event. Even then, it’s a chore. Yep – an initial egg laying death happened in our coop with the very first flock. As I mentioned, educational.

I have given chickens warm epsom salt baths and separated them from the flock to be alone, yet near the flock so they can see and hear one another because chickens are social and do not like to be alone. This “spa” bath has worked to heal them from wacky kinds of chicken things. Nothing a warm spa treatment won’t cure, even for a chicken! I’ve walked around all day with a half dead chicken in my arms swaddled in a warm towel because I didn’t want her to be alone when she died. Chicken hospice. I’ve learned a bit about myself in the midst of keeping critters.  I am truly a caregiver.

Rebel Red was a great chicken – quirky, fast, and a really good layer. She loved to fly up onto the garden fence and jump down into the garden. Evidently, the worms and bugs were juicier and more plentiful in the garden. Thing was, once she jumped over into the garden, she couldn’t figure out how to jump back out, leaving her stuck inside the garden to graze the veggies too. Maybe this was her plan, but not cool with us! This is how she got her name Rebel Red, and this is the episode that resulted in her wings getting clipped.  No more garden fence jumping for Rebel Red in this space and time! She was the fastest chicken in the flock too, racing toward the goodies first before any other chicken could turn its head and witness a dropped berry or apple seed – Red had already eaten the wayward fruit scrap. She was fast about everything. Fast to catch bugs, fast to eat the goodies, fast to get into the garden, fast to get out the gate, just fast. Unfortunately, last night, she was fast to die too.

We got home, John went out to gather eggs as usual and found her laid out in the laying box, breathing heavy, stinky and unresponsive. He carried her up to the porch and we had a good look at her. No egg stuck in her vent, but boy was her butt oozy and stinky! I went to my chicken resource website and found out she had “Vent Gleet”, which is chicken speak for a really bad yeast infection. So I started her on the routine, flock separation, warm epsom spa bath, followed with a diet of yogurt and mash. Website said it was possible she could recover. I submerged her in the warm bath and a few moments later she took her last breath while I held her small body. It was nothing short of painful to lose such a good critter.

The cycle of life can certainly be sad sometimes, but I find comfort knowing that we can provide our critters a soft place to die. Peace be with you Rebel Red and I hope you are jumping garden fences for good bugs forever and ever!

Do good, eat well, take care!
Love,
ReJo

What Now?

Take the money you were saving for a new driveway and buy a boat instead? Sure! Why not? The priorities have certainly changed a bit since the cancer diagnosis, and you only live once – YOLO!!UNADJUSTEDNONRAW_thumb_1565

We did it and we love it! We love the solitude you find out on the water, tucked away in a cove, alone. We love the energy of cruising the lake with family and friends, having a picnic on the water, towing folks around on a floating couch. Time spent on the Noah Genda is wonderful on all levels, relaxing, exciting and just plain fun. We’ve had some bumps along the way getting to know her, for example, our first run to the lake marked her with a scar down the side of a pontoon because we didn’t judge the distance between her and the mailbox very well as we pulled out of the driveway – oopps!! Battle scar! And, I’ve had the occasional tough time loading her up on the trailer after a great day at the lake, seems wind is a huge factor with this skill. But all these events are part of the joys and challenges of having and playing with a boat.

Personally, I’ve started skiing again and love every second of it. I was a water ski junkie in my younger years, and admittedly pretty good at it.  Unfortunately, life move me further away from water even though I’ve always felt a connection to her, every time she’s close. I was blessed to have grown up with a lake in my back yard and that’s hard to shake from your soul. She is a constant pull to come back home, into the water. There is something special in the water, a cleansing, a restorative energy. I love it, as does John, it’s infective!

The MM remains in remission and we are grateful every day. Maintenance continues and the cumulative affects of the daratumumab have begun to show themselves. No fun for John but he is coming through it like the champ that he is. He gets extremely run down and very forgetful. Short-term memory issues, back pain, joint pain, fatigue. But again, he is a camp!!

The challenge we face now that things have settled down a bit, is what now? How do you make the most of your life and enjoy every day? Cancer has a way of bringing forth the feeling of “Do it now! Don’t hesitate with what you truly want to do in your life!” But what is that exactly? Happiness, they say, is a choice. You can choose to be happy in your life, or you can choose to be frustrated and worried about every little thing. Hmmm. Do you love how you spend your days? We both work 9-5 in offices, under florescent lights, surrounded by complaining and negativity. Is that what we truly want to do every day? No! So what now? Nothing is the same as before, we have changed, people around us have changed, and maybe that’s the purpose of cancer – to awaken you to real, meaningful change. So how do you deal with that and still maintain your responsibilities? What kind of responsibilities do you really want now? Millions of questions spinning upstairs. Most of them igniting the “flight” response. Just run away to a new place, a new life, with new people in your days. Your family still loves you and respects you more now than ever. Family and true friends will always be with you. It’s what goes on in your own personal head that is crying out for attention and change. There has been so much change already, so let’s just keep the wheels turning. Sell out – leave the city – board the boat and move your ass to the lake…UNADJUSTEDNONRAW_thumb_152d

The simple thought just sends relaxation down the back of the spine.

So, what now?

Do good, eat well, take care!
Love,
ReJo

Remission

Remission = a temporary or permanent decrease or subsidence of manifestations of a disease.

Our meeting this week with Dr. CEO was brimming with good news. John is in CR a/k/a complete remission – 100%!! No cancer detected anywhere in his blood or bone marrow! Yippie! Not only are we over the moon about this, but Dr. CEO was giddy as well!!

Of course, we already knew this, but confirmation from the doc is chocolate icing on the cake, to be sure.

But it’s not over yet.  The maintenance protocol for the clinical trial John is participating in recommends he continue with the trial drug, darzalex, along with revlimid and dexamethasone for several years. However, during his recent consolidation phase, he started having “chemo brain” due to the high dose of revlimid, and stopped taking all his drugs a few days early because he felt so lousy.  We have since learned that the revlimid was suppressing his body’s natural ability to raise his blood counts back to normal, which could have caused him to become anemic or need blood without our knowing it. After meeting with Dr. CEO and discussing all of this, the good doctor spoke with the trial sponsor, giving John the green light to continue in the trial maintenance phase without the revlimid. John is happy, therefore, I am happy.

John was not looking forward to maintenance therapy, because he is worn out with all the drugs, but maintenance has been shown to quash the cancer for a longer period of time, and by him participating in the maintenance aspect he can continue his work within the trial. So, because he is not required to take ALL the drugs, he decided to move forward with maintenance with the aspiration of staying in remission for the rest of his life. Quality of life is the most important thing for him these days.  I totally agree and support him. The maintenance therapy consists of a one day infusion of darzalex once a month.  It’s still a drug, but it’s a targeted drug that is only given one once a month and he has been able to tolerate it well.

To say the least, the past year has been challenging and rewarding all in the same breath. We are blessed and grateful that his cancer was diagnosed early and we were able to get a hold on it before it progressed enough to cause organ damage. Due to this factor alone, his long term survival rate tripled. His age is a positive factor, and he has been considered “low risk” from the beginning. All good stuff in his favor.  The fact that he was already in good health, and continued to stay healthy during his treatment also enforced his fight. Through this journey together we have learned so much about staying healthy and helping our bodies do what they naturally want to do, which is to live healthy and strong. We both know that it could have been a much more aggressive cancer and are grateful that it wasn’t. Along this road, we have met fellow MM survivors who have had a much tougher time than we have, along with those who have trudged through it on a similar path, and certainly those that have had it much easier. Cancer, in any form, is a fluky varmint because it affects everyone on such a personal level. Plus, we feel that the opportunity to participate in the clinical trial for darzalex has been a huge blessing. The pace of change and progress for myeloma has become exponential, and we are so very beholden for the team at Vanderbilt, and the opportunity to be a part of this continued research in discovering more dynamic therapies. Such a very good thing, not only for us personally, but hopefully for many other MM patients!

Another ingredient to include in our celebration this month is our 10 year wedding anniversary!! Yep – 10 years together and it feels like they have soared! We are looking forward to family visits this month to commemorate our happy news. My folks will be here this weekend, and our Texas family will visit later in the month. We are so fortunate for the love of family and the time spent with them, but now it feels extra special to memorialize these happy events of our lives. Little did we know that the “gift” for the ten year wedding anniversary is aluminum. Funny how the universe works – we bought ourselves a brand new pontoon boat before we knew this interesting little tidbit, and anticipate that our wedding anniversary will be celebrated on this floating piece of aluminum for many subsequent years to come.  This month we plan to formally christen our new vessel with our families aboard!!

Awe the lake life…

Captain John

Captain John

Do good – eat well – take care!
Love,
ReJo

Independence 4 July 2018

Celebrating the independence of our country with fireworks and revelry – the happiness of not being dependent on the rule of another nation – becoming independent in our own right and honor. I love that this celebration falls in the middle of summer, perfect for families and fun – picnics and parties.

Independence = noun: independence = the fact or state of being independent.
synonyms: self-government, self-rule, home rule, separation, self-determination, sovereignty, autonomy, freedom, liberty, self-sufficiency, self-reliance, autonomy, freedom, liberty.

As John Adams said, “I am apt to believe that it will be celebrated by succeeding generations as the great anniversary festival. It ought to be commemorated as the day of deliverance, by solemn acts of devotion to God Almighty. It ought to be solemnized with pomp and parade, with shows, games, sports, guns, bells, bonfires, and illuminations, from one end of this continent to the other, from this time forward forever more.”

The day of deliverance settles with me here. Deliverance into freedom.

John has finished consolidation therapy for his multiple myeloma, albeit with some bumps in the road. He had a tough time with the drugs this round and stopped taking some of them at the end – too many side affects left him feeling pretty crappy. We go in tomorrow for a bone marrow biopsy in order to check the status of his remission, then we meet with Dr. CEO on July 10 for the results and next steps. All is well and he is healthy, happy and enjoying life – we both are. For this we are enormously grateful!

On a summertime note, around the homestead lately we are beginning to enjoy the fruits of our garden with many herbs, cucumbers, and still harvesting some fresh greens believe it or not. We watch the tomatoes everyday for their ripening. John won’t let me pick any green ones to fry before we get a red one. I’m itching for a fried green tomato y’all!! I love them – always have – always will!! On a visit to my best friend’s mother’s home one summer, she made fried green tomatoes. As we sat down to feast, Mom said, “Rene’ if you sprinkle a little sugar on’em it makes’em a lot better.” Jane came back with, “Mom, I don’t think she could like them any better.” Jane is always right on!!

Nature therapy = baby wrens have hatched on our porch which leaves us alert to their growth and feeding. It’s comical – momma wren pops upon the railing of the porch dangling worms, then drops down to the porch deck and hops along the decking to get closer to the bag where she has made a nest. The thing is, she has made the nest in Patsy’s dog-stuff bag that lives on a shelf in the corner of our porch – she could easily just fly into the bag and feed her babies. Maybe the origin of the phrase “bird brain”? Instead, she takes a cautious approach because Patsy lives on the porch too. When Patsy notices the action of momma wren, she jumps up to chase the movement, which terrifies momma wren and away she flies. The observation of agility – again, momma wren could easily fly into the bag and be done with it. Are she and Patsy playing a game, or is this momma wren’s natural struggle? We are training Patsy to leave momma wren alone – it works half the time, then we take Patsy inside so momma can go about feeding in peace.

There are three babies and we can hear them chirping for food now. Every year a bird tries to build a house on our porch, but usually abandons the nest because of the liveliness of life we bring outside. We live on our porch when the weather allows. It’s easy to enjoy watching the shift of seasons, the changing of our backdrop, the dynamics of nature.

We are all nature, living together on our planet, hopefully trying to harmonize our habitat. The one thing we can be certain of is the consistency of change. May we enjoy every moment.

Blessings and happy summer!

Do good – eat well – take care!
Love,
ReJo