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.

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 🙂

Ouchy

Whitehead Fellas

Sweet Beach Paws

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.

Lakeside Sunset

Holidays 2018

Office Orchid

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!

Rebel Red

Red & Queenie

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!!

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…

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

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

hungry

the nest in the bag

sleepy

interested pup

The Final Round

YES!  In remission!  However, Dr. CEO and Sunshine inform us that clinical trial protocol is six weeks of consolidation therapy.  Thank God we went to the beach and he was able to play a gig trip before all this started again.  Plain and simple – it sucks!

After stem cell recovery John was feeling so good, very strong, no neuropathy, a regular constitution, all the signs that point toward a healthy remission, which he is in, then a big ass slap in the face with another six weeks of drugs.  Ugh!!  He’s irritable, depressed, constipated and has no energy except for the reeling and anxiousness that comes along with the dexamethazone.  We just keep thinking six weeks, six weeks, it’s only six weeks…

After consolidation, trial protocol indicates that he be on “maintenance” for 2-5 years.  We’re not sure that’s gonna happen.  Why on earth would you want to put your body through years of drugs that can, and do cause other cancers, and affect your body in different ways besides having the cancerous plasma cells that could “possibly” rear their ugly heads again?

We remain to be firm believers that food and lifestyle can and will keep John in remission for a very long time.  The drugs have certainly helped him get there quickly.  But we have not sat by idly and just let the drugs work alone – nope we have taken personal responsibility of our diet and lifestyle and will continue to keep those new habits front and center.  Thank you very much!

However, sometimes it is hard to slow the mind down enough to really think about things, and be aware of putting the bad habits away, we know what we want to do but habits can be so hard to change.  We continue to seek inspiration and healthy habits for ourselves.  We encourage each other and work together to try and stay on course.

We must take a minute to mention a few organizations that have helped us through this journey and continue to play a big part in our lives.  Gilda’s Club is an awesome organization that offers many great support options, inspiration and camaraderie.  We joined the Multiple Myeloma group there, and even though we were not able to attend the meetings during stem cell transplant, we are getting back into the groove of attending now.  We find comfort talking with others who have been through and are going through common challenges.  Sometimes we realize just how blessed we really are and how much knowledge we do have about helping the healing process.  Hopefully we are able to share our small bit of education enough to help others too.  Gilda’s offers a wonderful free library, multitudes of classes, cooking instruction, yoga, mediation and other activities to help families, of all ages and walks of life, deal with cancer and meet new friends.  Simply, Gilda’s is a welcoming and comfortable place to be yourself and hang out anytime.  We love it!

Through attending meetings and chatting with new friends at Gilda’s, we learned about The Heimerdinger Foundation that prepares and delivers healthy meals to people going through cancer treatment.  I fell in love instantly and began volunteering with this group, and cannot say enough good things about them.  Honestly, when I talk about The Heimberdinger Foundation and what they do, I get a little choked up – it excites me to work with them, to not only learn more about nutrition and cancer, but to be able to give my time and effort to such an amazing cause.  This experience, so far, has endorsed all the changes we have made to our own diet supporting John’s healing.  All the meals are made fresh, dairy free, sugar free and gluten free, and of course organic.  They have a small farm of their own, but are also supported by several farms around town with fresh organic vegetables.  Not only are the meals brimming with the energy of love, they are healthfully healing and DELICIOUS!  Please go take a look at this organization and try a recipe, which you can find under the “Resources” tab on the website.  You are what you eat, there is no doubt about it, the food you put into your body becomes you – so make you healthy and strong!  Get involved if you feel the pull – these folks are fabulous, inspirational and fun!

As I’ve said in previous rants, I can go on and on about healthy food and the circle of life that goes into bringing that food to our tables.  I believe that my own ancestors living today remain alive and healthy because they ate REAL food as children and young adults.  If I can give one bit of advice it would be to THINK about the food you give children.  They are young and growing and deserve a strong, healthy life.  For example, if a kid loves hot dogs, learn what that animal ate before it gave it’s life to be a hot dog.  As the child eats the hot dog he will also be eating what that animal ate.  I’m not sure, but it could be a bad idea to force small organs to process chemical laden meat before those organs are fully developed.  Just because foods are FDA approved, does not make them clean, in fact, much of them are pure poison.  The state of our nations health is a testament to that.  Face it, we are not doing anyone any favors feeding them cheap ass fast food, ice cream, cookies, and hot dogs.  Check out the ingredients and see if you can even pronounce them.  I know many folks don’t think about it, or care right now about the food kids eat, they just want the child to eat.  But if that child develops a disease requiring them to take medication the rest of their lives, odds are it will be because of processed, chemical laden foods.  Clean healthy food CAN heal a broken body, but why go through the pain of breaking it to begin with?

I’m always happy to share suggestions and healthy options anytime – the kids, and adults, won’t even notice the difference.  Don’t tell him, but my Dad even commented on how delicious my spaghetti sauce was and it didn’t even have meat in it – ha!  For example, try kosher hot dogs and anything the “Annie’s” brand makes, most grocery stores stock these items, in fact Kroger stores are really stepping up their game in organics and non-GMO foods.  And for heavens sake, whatever you do, DO NOT buy any Round-up pesticide!!

Okay, I’m done.  But again, always happy to talk about it and share – anytime!

We are half way through with consolidation therapy and will certainly be glad when the whole mess is done.  Will we ever really be done?  No – but we will be more educated and conscious and aware.  We will love more and we will laugh more and we will live well.

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

Gigging B4 Consolidation

Stem cell transplant is successfully complete, he survived the mustard gas treatment (thank God!), his counts have recovered, his beard is growing back, we’ve been to the beach, and have surpassed Day 100 of John becoming a “new man.” Time to go back to Vanderbilt Infusion Clinic for a few weeks so John can finish up treatment with what the trial protocol labels “consolidation.” He will get a bit more of the trial drug, along with the regular drug therapies in order to destroy any “remaining” cancer in his plasma cells and extend his remission.

Also, I am happy to share some great news about his trial drug Daratumumab. The trial John is participating in has been extremely successful and the drug is now approved for first round treatment of multiple myeloma!! Yeah!! It’s working across the country for many MM patients with wonderful results. Ditto for John!! After this consolidation treatment, he will get more scans and another bone marrow biopsy (we’ve stopped counting how many he’s had at this point) where we will learn that he is in “Complete Remission!” Which we already know, but at this point we are simply taking the advice of Dr. CEO.

Day 102 was the day we came back to the clinic for Tuesdays with Teresa (our favorite nurse who we were excited to see again), and it turned out to be a very late start. Even though we arrived at the hospital for his first round of appointments at 8:00a, they didn’t get his infusion started until 1:00p. There was an extremely long wait to get called back to a room because the blood lab was down, what?? How does a blood lab go down in a hospital? It’s always frustrating to have to wait and wait and wait, but there we were waiting for drugs like a junkie in the streets. Ugh! Needless to say when they took his vitals, his blood pressure was high. However, John was much better at keeping his irritation in check than I was, so I took lessons and deep breaths.

Of course we saw some familiar faces, but we also met some new folks that had the same helpful, caring nature as our familiar nurses. After infusion began, the process went off without a hitch and we were done and having dinner by 6:00p.  We will be spending six more weeks in consolidation and have absolute faith that any and all remaining cancer cells will be put to death.

On a higher note 😜, several months ago, John committed to a play some gigs with a band he had played with before he was diagnosed. He was so excited when he got the call and was confident he would feel good enough to go play. He did and he did!! The weekend before we had to be at the clinic for consolidation, he loaded the bus to Kansas City and played a few shows. The boys rehearsed for three days straight before heading out, and John was able to get back into gigging shape. Even though rehearsals were challenging, he did it and was as giddy as a school boy to be banging the drums again. I was overjoyed to see him so excited, plus I got a weekend alone too. Bonus!! They had a great time, he was able to reconnect with his musical buddies and the shows were bursting with the energy that is so addicting to musicians. He was contentedly relaxed and exhausted upon returning home.

I hope to see him play many more shows in the coming months, as we know, without any doubts, his health will continue to do nothing but improve and remain in remission.

The Boys with The Troops – Armed Forces Day

 

Load In

We love y’all!!
Do good – eat well – take care!
ReJo

The Beach

We went to the beach! Stole a week to relax by the sea in an itty bitty penthouse condo with a beautiful view of the Atlantic ocean. Our balcony overlooked a dune break of vegetation where all kinds of critters fed. This was the first time either of us had been to Hilton Head and it quickly became a favorite. Never had I enjoyed my morning coffee overlooking the beach being entertained by not only frolicking dolphins, but quick little rabbits, happy grazing deer and a family of Cardinals. I’d never seen Cardinals at the beach, and my sixth sense hinted they were an angelic wink from home.

 

vegetation

angel bird

relax

Of course we relaxed, but we also tried to take in some local flora and culture. We visited Beaufort, SC, a beautiful small southern waterfront town. We walked the waterfront, shopped the quaint shops and refreshed ourselves at Hemingway’s. A beautiful cloudy day spent in a charming town. We took a boat to Savannah, GA along the inner passage and saw the “industrial” aspect of Savannah – the water treatment plant, the natural gas refinery, etc. This little trip was interesting to say the least. We caught the boat from Harbor Town, but in order to get to Harbor Town, we had to drive through a swanky neighborhood (aka Sea Pines), and in order to get thru the neighborhood, we had to pay a $6 admission!!  All this just to get to Harbor Town and catch the boat to Savannah – there was no other way to get there, and every entrance had a guard shack – superduper weird!! But the boat ride was enjoyable, albeit chilly, we met some very nice folks from Canada, North Carolina and East Tennessee. Once in Savannah, we took the Hop On Hop Off Trolley Tour which enabled us to get around to see all the squares, plus we got an entertaining history lesson from our native trolley driver.  We only had a short 3 hour window before we had to get back to the boat. John wanted to see Savannah because we were close and both love the book, Midnight In The Garden Of Good And Evil, but neither of us have ever seen the movie. We will watch it now! We walked Forsyth Park, visited The Mercer House and had lunch at Clary’s Diner, which was awesome! We were pleasantly surprised at how good the food was and I had to laugh, our waitress’ name was Mary – Mary at Clary’s. 🙂 We did all this and didn’t miss the boat, in fact, made it back to River Street in time to have a beer at the oldest bar on River Street – The Boar’s Head – and got more historical info from the bartender. We plan to go back to Savannah and spend more time, it is a lovely old city.

 

In front of Mercer House

Forsyth Park Fountain

A favorite beach experience this trip was watching the little kids run, run, run on the beach. It tickles me how small children run everywhere they go, if we could figure out how to bottle that energy to use as we get older, oh how rich we’d be! But these kids were beyond funny because of the tide pools – which are everywhere and you can’t really tell how deep they are until you are right up on them, and kids don’t pay attention. Imagine watching them running, running, running then running through the water and boom! down they go, falling into the tide pools. I couldn’t help but laugh every time. Thankfully, no kids were hurt in the excitement, but it was certainly hysterical to witness!

We enjoyed coffee and cocktails from the balcony. Ate breakfast and dinner on the balcony. Discovered wonderful fish tacos and John’s favorite blackened grouper sandwich at The Sand Bar on a rainy day. Rode bikes on the beach (a first for both of us) and rode bikes to the grocery store on the beautiful pathways. We walked and walked and walked. We hung out on the beach and read, listened to music, played paddle ball, and stuck our toes in the icy Atlantic. Bona fide healing.

 

Sandbar kiss

After the storm

Smiles

It was good to get away for a break, to try and forget about cancer and his upcoming final round of treatment, but trying is all we could manage. We did a fairish job of putting it on the back burner, but it’s always there, always. It is such an odd experience that I almost can’t find the words to describe. Because he is doing really, really well. Getting stronger all the time, his facial hair is coming back and he is feeling much, much better. Sometimes, we come close to not knowing it at all and that feels good. And then, we don’t understand why this dark cloud finds us and why we allow it a gateway. Yes, we have bad days, we are human. We attempt to keep them short, to bear the low days one at a time. Attend a pity party, but leave early and get back to blendering toward happiness, the blessings and the goodness we get to experience every day. Some days are tougher than others. Not saying we had those days at the beach, but they sure showed up when we got home. I think we tried too hard not to talk about it when we probably should have talked about it.  We both just wanted to leave it alone for a bit and lick the wound, yet quickly found out that’s not quite possible. Forgetting is not allowed right now I guess, and I suppose it never will be. We must keep the courage it takes to stay healthy and in remission. Cancer will shadow us the rest of our lives, it’s how we deal with it that will make all the difference. After all, the shadows are only fears calling out for love. We will stay strong and chase after the love!

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