“Courage is being scared to death but saddling up anyway.” – John Wayne
We went in today for labs and a check-in with our team. Quick in and out early this morning. We did not expect the rest that came, but it was all outstanding—meeting with the Bristol Meyers liason at UAMS, who does an exceptional job. She used to manage the Allo Transplants, so she has vast experience managing paperwork, informed consent, and checking on us to see if there is anything we need. Continue Reading »
“Winners never quit and quitters never win.” –Vince Lombardi
Dave continues to improve daily with his femur fracture. His PT person is pushing him within reason and chats about the why and what of it. She’s very encouraging. Today she said when he said he wasn’t doing 30 of each exercise, “If you were doing that, Dave, you wouldn’t need me at all!” She also gave me another tip with the shower transfer bench so that the water runs back into the tub instead of on the floor. It’s all these little things she things to shares that have been extremely helpful. Continue Reading »
One of many challenges we face in any cancer journey is how to better our odds to overcome the disease, survive the toxic chemos needed to push the cancer into remission or cure it. And then, how do you restore your schnockered immune system. Many myeloma cancer patients don’t die from their cancer. They die from infections, fungus, pneumonia, and a whole host of things that occur because they are immunosuppressed. Continue Reading »
“Anybody can sympathize with the sufferings of a friend, but it requires a very fine nature to sympathize with a friend’s success.”― Oscar Wilde
Years ago, when I wrote my opinion piece at The Myeloma Beacon on our incredible success with HBOT (Hyperbaric Oxygen Therapy), it garnered considerable attention from those in that world. It was pretty unexpected. Continue Reading »
“…every gift is exactly that, a gift.” – Maya Angelou
What a lovely weekend and then extended two days with our daughter and her new husband here in Little Rock! Just what the caregiver ordered for Dave (and me!). I was so heartened when I called her and just casually said, “Hey! Any chance you two could pop down for a visit with us? It’s a good time for your Dad, and we are just hanging out. We’ll put you up downtown in the River Market, and you and Jeffers can have fun exploring around there when not with us at the apartment.” She didn’t hesitate. Checked their schedule and booked their flight. They LOVED the Old Peabody, now owned by Marriott. Said it was “OFF THE CHARTS MOM!” Jeffers found a great sports bar nearby called Brewskis. Best wings and most delightful server! Continue Reading »
“Don’t be pushed around by the fears in your mind. Be led by the dreams in your heart.”― Roy T. Bennett, The Light in the Heart
There will probably be a lot of “MishMash Musings” in the coming weeks leading up to Dave beginning his Abecma Car T Therapy, currently scheduled for Halloween. Perfect if you ask me.
We have thoroughly enjoyed having Montana and Jeffers here spend some fun days with us in Little Rock. They were supposed to fly home yesterday but got caught up in the Southwest flight cancellations debacle. The reasons for it are quite the debate online. So a pivot was in order, and we brought them back to the apt to hang out and sleep on the provided air mattress. Jeffers cooked an excellent Salmon dinner with a tortellini/broccoli side that was fabulous with the Salmon. Then we settled in for our second round of Rummikub, a fun tile game based on Rummy, complete with trash-talking! Continue Reading »
“And in the end, it’s not the years in your life that count. It’s the life in your years.” – Abraham Lincoln
Another stellar day here in Little Rock yesterday. We managed to get the car registered, and so now we are 100% legal! One of my fellow apartment dwellers gave me the “better” Motor Vehicle Office to go. Boy, was she spot-on. It’s further away, though a lovely, easy drive. But in and out with knowledgeable peeps who got it all done for us. We also learned that when we get home and register in California, call the number she gave, with our file number she wrote down, and Arkansas will wave the property tax fee that charge. It processes in January, so we’ll be home most likely well before then. We needed to get it done, and trying to slip it in when Dave felt well enough and not neutropenic was a challenge. Also, he still works daily, so “What’s your schedule today? How are you feeling?” Anyway, yesterday was the day and it felt great to be successful. Continue Reading »
“Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.” – Dali Llama
Every day here, I’m meeting and interacting with people in a profound and fun way. It’s like I’m in one giant neighborhood as I meander around from venue to venue. Often, I’m chatting with them while making a purchase or something, and it usually comes into the conversation that I don’t live here but am from California, and then it takes off. I tell them exactly why I’m here and watch their eyes grow large and become curious. I often say, “Did you know you have a world-class Multiple Myeloma Institute here for over 30 years?” “Did you know that people have been coming here from all over the world and the 50 States?” Many don’t. I’ve enjoyed making them incredibly proud of their little town of Little Rock and how much I’ve come to LOVE it here. As I recount the cliff note version of our story, they are just amazed. Each time, I’m having fun and sometimes meaningful conversations with strangers and having a ball doing it. It’s been an unusual and wild ride here this time. I haven’t quite put my finger on why my interactions daily, multiple times a day, are so profound and exciting, and beyond just a superficial, ‘how ya doing?” But for now, I’m just loving every encounter and find myself having the most fun. Continue Reading »
“You’re always on your way somewhere. The key is: find a way to be happy wherever you now are on your way to where you really want to be. (We’re speaking of the state of being you want.) It does not matter where you are; where you are is shifting constantly – but you must turn your attention to where you want to go. And that’s the difference between making the best of something and making the worst of something.” – Esther Hicks
As a military brat, and one who has stayed very connected to my fellow childhood brats and who also collects new ones along my life’s journey, we have a unique and shared experience no matter how our parent’s served or what Branch, or even for how long. There are some interesting characteristics and understanding that we all uniquely share. And then there are marked differences. Continue Reading »
“Sometimes, the best way to help someone is to just be near them.” – Veronica Roth, Divergent
Today I witnessed one of those moments between another couple in the throws of the journey of Myelomaville. My assessment was they are at the beginning of their journey, and I so wanted to go over and say, “Hey..there is so much hope. Be strong.” But instead, I just snapped a quiet moment of them offering comfort to one another as they waited to head in for their daily infusion clinic support. Dave and I have had these moments. Just a subtle touch. A squeeze of the shoulder. There is something very endearing and profound about a couple dealing with a cancer they probably never heard of and the arduous task of getting through a grueling Stem Cell Transplant. Before Covid, there was often interaction and support amongst patient couples waiting and learning of each other’s journey and where they are from. The challenges they face. But sadly, we are all very isolated right now. But we share smiles behind the masks and quiet acknowledgment of one another as we wait. Continue Reading »
Acknowledge simple gifts. There are gifts all around us.
I’m an old-fashioned road trip kinda gal, so I ordered an Adventure Edition of a road atlas and a full fold-out paper map of the USA for our road trip home. I’ve already put in several stops and come up with about nine days. Dave has yet to delve in. And I don’t know how he’ll be feeling at the end of all this and if we’ll have to get on home. But it’s enjoyable for me to dream that we can have a leisurely trip home visiting a few friends and some places we’d like to see. It’s good to have something to look forward to. Continue Reading »
“Gratitude is happiness doubled by words.” – G.K. Chesterton
There is a comfort in routine and things predictable when dealing with our Myeloma crisis. Knowing when we need to go into the clinic and knowing we can just chill until we do.
Today I ran to the Vitamin Shoppe in N Little Rock. Then back to our area and beyond to get gassed up at the cool new Costco in LR. Then on my way back I stopped and the infamous Purple Cow and got burgers and their famous shakes which I knew Dave would love. It’s these things that bring me a sense of peace in it all. Continue Reading »
“Medical science has proven time and again that when the resources are provided, great progress in the treatment, cure, and prevention of disease can occur.” – Michael J. Fox
So in an effort to learn more about all of this, when I get the chance I ask a few questions of our doctor while we are seeing him. Today I learned some more things I didn’t quite have right or understand fully. Continue Reading »
Goodness Village volunteer, Misty, dropped off a beautiful fall wreath for our door
“Turn off the news and get out in the world. It is full of wonderfulness and humanity.” – Lori Puente
What a whirlwind this particular episode in our reluctant Myelomaville adventures.
Our original plan was that Dave would come out and get his T Cells collected on September 13th. (Well really mid-August, but the pharma canceled all of them in August which is what put us in this precarious situation and the femur break.)
Our plan was, he would fly out to Arkansas a month later to get them infused back to his body and I would meet him in our 20 yr old VW Passat at the airport so we could avoid the rental car fees. Forget that I was hopeful our Passat could make the trip! It’s in good shape and runs well, but it is old.
I bought our 2001 Passat used in 2007. I have enjoyed and loved that car. When we got my cute little used California VW EOS hardtop convertible Dave took over the Passat. It was perfect. We had a touring car and a fun post-kids car. Continue Reading »
“My heart gives thanks…” – Willam Stanley Braithwaite
We had another productive day here today. The VW Dealership sent over a guy to sign the papers on the new car we purchased. I’ll share that fantastic story later.
Then we headed in to get some labs but were late, so we asked if we could come back after our 2 pm appointment with the ortho. No problem. So we headed up one floor and waited to get in to see him so he could take out the staples from the surgery two weeks ago and see how Dave was doing. We will see him in two weeks and get some x-rays to have a look-see. And Dave will have had some physical therapy by then (we start that next Wednesday). He was very pleased with how we were able to negotiate the things we needed too. Dave was delighted to get three bulky bandages off his body. We may need to get a shower chair for Dave for a bit. Provided we can even get his leg into the tub. I’ve put in a request at Goodness Village to see if they have one before getting a script. If they don’t, we’ll get one and then donate it to them when we leave. Continue Reading »
This is one of the questions I’ve learned over my life that is worth asking. Many times I would have written a letter and ventured off into phone calls and wasted precious time setting them straight and taken my time and energy away from what Dave and I were dealing with. It went against my nature to let those things go and just find a way to move on or workarounds. In the end, it was the right thing and I attribute it to age-related Wisdom! haha Continue Reading »
“Look for what is good and you will certainly find it.” – Anne Perry
We have been on yet another unexpected journey. I’ve been posting snipets at my companion FB page called Riding the Wave (you can search Multiple Myeloma too and it should come up.)
My blog has been very quirky and weird over the last couple of years and since I hadn’t been blogging much, I just hadn’t gotten around to contacting my best ever web guru friend, Bari Mitchell. I worked with her at the University of Maryland in the Engineering College. She has retired and has helped me over the years with a few things and is always willing and quite stellar. Anyway, she got it all sorted out for me and now it shouldn’t be doing the funky things it was. Continue Reading »
“Courage is fear holding on a minute longer.” – Gen. George S. Patton
We have had bits of respite here and there after Dave’s relapse in year 5 or somewhere in that time frame. Then things just started being troublesome. Little annoying little things that Dr. VanRhee was watching and suspicious of. Each time, his suspicions were spot on. Sadly when we come home and meet with our local, we find ourselves having to defend the next steps. It troubles me to the point I may have to write him a note about it. Since Covid, I haven’t been able to attend in person anything with Dave. Anyway, Dave leaves confident and then he comes home from the local distressed. Our local knows Dr. VanRhee and I keep encouraging him to call him personally and get his questions answered directly on the course and path we are on. Sigh… It shouldn’t be so hard sometimes. Continue Reading »
Oh, the adventures we’ve enjoyed since the years I’ve blogged about our journey in Myelomaville. Some wonderful and some not so much. Typical to life in general, to be honest. Though with Myeloma, we can get immersed in everything through that lens, rightly or wrongly. No judgment here! And in these difficult times of Covid and the hysteria of it all, it seems even more heightened.
Our son and his wife, my beautiful daughter-in-law, Angelica (I’m keeping her forever!), expect our first grandchild this spring. It’s very emotional for me. Not that I wanted to pressure my children, but I have High School friends whose grandchildren are graduating high school and college already! Hudson has managed to survive the Covid shutdowns in California with his tree care business (BridgeWood Tree Care). He and Angelica have worked diligently to help their employees gain the best advantage while also availing themselves of the programs for themselves as well. We are amazed and proud of how well they are weathering these pandemic challenges. Where they live in Stockton, they’ve experienced a lot of rioting and looting. Each night they’ve had to fortify their property in ways no one should have to. I thank god for Angelica and her upbringing in Colombia. She is steadfast and strong, while other young women might head for the hills. But it has created unnecessary stress not ever being able to leave their home and property uninhabited. And yet, they seem to be taking it all in stride. I’m immensely proud of both of them and excited for their new adventure as parents. Continue Reading »
“The simplicity of it is, we’ve been living our life. Apparently so have many others. It’s a positive.” – Lori Puente, Myeloma Caregiver
I was noticing a few things in my stats and so like following bread crumbs, it took me to old haunts. Blogs. Websites. I began to wonder, “Oh yeah, how are they doing, what’s she up to, etc.” And low and behold I discovered that quite a few peeps stopped their regular blogging like I did. Somehow, for some of us, who get a remission and maybe a medication reprieve, Myeloma seems to no longer be defining us or our daily life. It’s certainly a blessing to have that opportunity no matter how short or long it may be afforded us. Anyway, it was a bit heartening to know that they are out doing their thing, hopefully like we have been. Continue Reading »
“Courage is being scared to death but saddling up anyway.” – John Wayne
“The greatest wealth is Health.” – Unknown
“Anybody can sympathize with the sufferings of a friend, but it requires a very fine nature to sympathize with a friend’s success.”
“Don’t be pushed around by the fears in your mind. Be led by the dreams in your heart.”
“And in the end, it’s not the years in your life that count. It’s the life in your years.” – Abraham Lincoln
“Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.” – Dali Llama
“Sometimes, the best way to help someone is to just be near them.” – Veronica Roth, Divergent
“Gratitude is happiness doubled by words.” – G.K. Chesterton
“Medical science has proven time and again that when the resources are provided, great progress in the treatment, cure, and prevention of disease can occur.” – Michael J. Fox
“Look for what is good and you will certainly find it.” – Anne Perry
Oh, the adventures we’ve enjoyed 
