Riding the Wave - Multiple Myeloma

20/10/2025

I belong to a Military Brat group. And they were all chiming in about BRAT, and where it originated and what it means. Many think it’s the regular definition and derogatory, but the theory is it’s actually an acronym, which has a bit of a derogatory humor. Anyway, I searched my old posts and found it and shared.

It gave me some solace in our new health challenge with Dave.

A Caregiver's Inspirational Journey Through Cancer

19/10/2025

We are finally home after being away over two weeks. First Vegas where Dave attended his second craps event. He had a ball! He set new personal winnings records. And little oh me had a winning trip as well. I even sidled up to the craps table next to him and placed my beginner bets of 6&8 on the table and won over $200.

Then we were off to Little Rock for his ckup. We suspected it wouldn’t be an “all looks good” visit. And it wasn’t. Sigh. We’ve been here so many times before. Over the 17+ years Dave has migrated from low risk, to non secretory, to high risk relapsed/refractory. He’s been on every line of therapy that has been available. I mistakenly thought we had some new ones but they are still in trial. Anyway, he was struggling with how he has such low myeloma in his bone marrow, none in his protein counts, is MRD negative, but has active disease and new lesions. Well, that’s why we go to UAMS. They are the best myeloma hunters there are. It all showed up in his scans. So we extended our stay to do a biopsy that will be sent off for genetic sequencing to see exactly how is myeloma is presenting. In the meantime we are adding Dara and Pomalyst to his regimen. He’s been on both before. Over many years they have discovered that they can be helpful again in combinations. All of this however, is if his MM is indeed presenting in a particular way. If not, it won’t be helpful. So in about 3 weeks we will telemedicine with our doc to discuss the results of the testing and go from there.

Admittedly these are the times where managing my worries are vital for me, Dave, and our family.

While we were enroute to Little Rock we learned that Dave’s beautiful cousin Valerie passed away unexpectedly from a brain aneurysm. She was 66. We of course we were stuck in Arkansas, but our amazing daughter was on a work trip in NYC, so she rearranged her trip home to train up to New Rochelle and represent us all at the memorial. We are all incredibly sad by her passing. She was a gem. Beautiful and charismatic. She will be so missed. (The photo is one of my favorites from our wedding. Dave’s father, Sal, his sister, Dave’s Aunt Millie, her daughters, Diana and Valerie. Millie is 92 and the only one still living. She is understandably crushed to lose Valerie so unexpectedly. We all are.)

14/10/2025

He was such a stable voice in our world with answering our questions each week for years. God’s Speed!

It is with great sadness that the International Myeloma Foundation (IMF) shares the news of the death of Dr. Brian G.M. Durie, co-founder of the organization. Read the press release: https://mmsm.link/4q95XLn

13/10/2025

A soothing outdoor garden was perfect today while I waited for Dave. It was a long day of testing. Blood work, bone density, bone marrow, PET scan. (MRI tomorrow.) But we are done for the day and headed for some grub for Dave. He hasn’t eaten since last night as both the bone marrow and PET require no food.

09/10/2025

Dave is having a rip roaring time at his Craps seminar and hanging out with his buddies. It’s actually been quite enjoyable to listen to them talk about this game, that roll, some fiasco at the table that caused an uproar. And I finally put my own bets down at the table when he was rolling. He’s an excellent roller. I even caught the dealer failing to give me my winnings by accident. That’s one reason I haven’t wanted to play. There’s just too much going on! Anyway, I plucked $100 down and walked away with $300. 👏🏻

We loved meeting up with our friends from Denver and had a good time with them.

Dave thinks it was a brilliant suggestion on my part not to fly home only to turn around and fly back out to Arkansas. So we are in our quiet time after the seminar and our friends have headed home. We will go to the Wizard of Oz movie at the sphere this afternoon that everyone is raving about.

The weather is great and the downturn in visitors has been rather nice for us.

01/10/2025

We are on the move again.

A trip to Vegas where Dave has a craps event. He’s a very serious student and player of the game. We will meet up with dear friends from Denver who enjoy gambling.

Then we will be off to Little Rock for Dave’s ckup. His numbers are rising so we expect to talk about what therapy changes we will embark on. He’s had a good run on Tecvayli. Better than most we have been told.

Our calmness about it all is testament to how many times we have been in this moment and have learned it’s just not worth worrying over and being alarmed. Our team at UAMS is likely already pondering his options before we even get there for all his tests. We know there are new therapies available after this as we’ve already talked about it with them in previous ckups. Thankfully while Dave is at the “end of the line” on therapies they get new ones approved that will be available to him when the time comes. This is yet another one of those times. Whatever is decided we are hoping our local is already approved to deliver it so we don’t get stuck in Arkansas. But we’ve experienced that before and know the drill. We have great connections for support whenever we are in Little Rock. If we need something, they are always there for us.

So say a prayer for an easy transition for Dave. The challenges are always the new side effects and that they are manageable. And of course that the therapy does its job. 🙏🏼❤️

We continue to feel blessed that there is so much research interest in this particular blood cancer. It has kept Dave alive and living a relatively decent quality of life, which is equally important.

17/09/2025

Our doc. He was our 3rd at UAMS. He’s been caring for Dave for about 12 of the 17. 💕

At UAMS Health, we are honored to work alongside these expert providers named in the 2022 Best of the Best Awards by AY Magazine.

28/08/2025

We made the best choice for us 17 yrs ago to take on the traveling and coordination with a local cancer facility that would treat Dave according to UAMS protocol. 💕

11/08/2025

We’ve loved our experience and quality care there for 17 yrs! It’s a community who work towards making everything they can easier as you negotiate a difficult health condition. 💕

The University of Arkansas for Medical Sciences (UAMS) is rated among the top 10% nationally for cancer care by U.S. News & World Report in its 2025-2026 Best Hospitals ranking, becoming the only hospital in Arkansas to make the list of the nation’s top cancer centers. This year, UAMS received…

16/07/2025

❤️

13/07/2025

This fan girl got her autograph and photo with Ray Romano at the Celebrity Golf Tournament in Lake Tahoe.

Peter Boyle who played his father on Everyone Loves Raymond had Multiple Myeloma. Every year he participated in an annual fundraiser in Los Angeles for the International Myeloma Foundation When he passed away, his co-star Doris Roberts took over. When she passed away, Ray took it on. So it was really awesome that I got to thank him personally and introduce him to Dave. 💕

04/07/2025

It will be interesting to see how patients do with earlier introduction to the Car-T. Not yet a frontline therapy, but getting to patients sooner.

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