Multiple myeloma: “There isn’t a one size fits all approach to this disease.”
Published 13 Jul 2022 • By Berthe Nkok
Lori’s husband, Dave, has multiple myeloma but was initially misdiagnosed with metastatic bone cancer of the spine.
After his second disagnosis, Lori became his caregiver and launched her blog, Riding The Wave – Multiple Myeloma, to share her experience with the disease as a caregiver.
Read her story below!
Hello Lori, you agreed to share your story with us on Carenity and we thank you for that!
First of all, could you tell us more about yourself?
I’m a United States Air Force Brat and often tell people when asked, "I’m from everywhere and nowhere". However, I was mostly in Northen California and Northeastern Pennsylvania growing up. My grandparents had a small dairy farm there and I spent my summers with them and my cousins. It is how I ended up on the east coast for over 40 years and where I met my husband.
We raised our children in Maryland, outside of Washington DC. We have a son and a daughter who are grown now. One lives in California, where we currently live and the other is in Annapolis MD. Both are married and we have one lovely granddaughter from our son and his wife.
I worked part time while our children were growing up as a calligrapher for a well known master calligrapher and his wife doing overflow work. Later I worked full time at the University of Maryland for a research think tank in mechanical engineering as their office administrator. It’s where I learned about research, the process, how long it takes to get into print, and so on.
I love many things. Arts, music, travel, meeting people and hearing their stories. When we relocated to California in 2008, near where I grew up and graduated high school, I endeavored in the fiber arts of spinning and weaving.
Photo courtesy of Dave, Lori and their children
In 2008, your husband, Dave, was diagnosed with multiple myeloma. Could you tell us about the early manifestations of the disease? Were there any warning signs you observed?
There were many warning signs that were not obvious until AFTER his diagnosis. He was feeling unusually fatigued and complaining about shoulder pain. He had a physical in November 2007 and was given a clean bill of health, but shortly after had a bout of kidney stones and then a couple months later had them again. That was when in the back of my mind I was thinking something is going on. But we were in the middle of a coast to coast move and Dave was already living with friends of mine in California, working in his new job and looking for a house for us to move into. I was busy preparing our home to sell and to move, as well as get our kids situated. They were in college at the time.
How did he experience the diagnosis? How was he managed? What were his treatments and how effective did he find them?
He was preparing to leave for a business trip (he’s a telecommunications engineer) when he heard a loud pop in his back and struggled to move (some sort of catastrophic bone event is commonly how people discover myeloma). He was in excruciating pain. My friends called me and we decided to get him to the hospital via an ambulance. I went to work and waited to hear back. He was misdiagnosed with metastatic bone cancer of the spine.
As I travelled to get to him from the east coast I received the proper diagnosis that he had multiple myeloma, which of course we had never heard of. The small town hospital had a new hemotology/oncologist from a well known univeristy hospital and he started him on Thalidomide and Dexamethsone. Both had a lot of side effects, but they were quick to get him into a “very good partial response”. We also had to get his chronic pain under control, as the pain was caused by a T8 Vertebrae collapse.
The doctor for some reason failed to impart that particular knowledge and didn’t schedule him for a repair. So we just worked on managing his pain. He lost a lot of weight and had trouble eating, sleeping and moving.
So while his myeloma was managed, we had so much more going on. And as with many major unexpected interruptions in life, we were busy managing the move I still needed to undertake, notifying our family members, and supporting him to get back to work.
It was June, so I asked our son if he could forego his summer job and fly out to care for his father while I went home to pack up the house and make the move. Once I got to California, we set about getting basics of the move handled and deciding what to do.
What were your options ? Where would you go for treatment ?
As with many people newly diagnosed, we wanted to deal with it close to home. It, being a stem cell transplant which was the recommendation at the time for someone as young as my husband (age 47). Our first local consultation was very unsatisfactory to me given the research I had already done. I kept coming up with University of Arkansas Medical Sciences (UAMS) in Little Rock, Arkansas, which was 2,000 miles back to the east. They had the only Myeloma Institute in the world at the time, that had been operating for 20 years or so then.
So after the initial consultation I opted to take Dave to UAMS for a consultation. It was such a good experience that we decided that’s where we would go and went home to prepare for a long term stay there to begin his Tandem Stem Cell Transplants (SCT).
How did your husband’s disease evolve?
Dave got into remission very quickly through the several month process, flying back and forth from November 2008 to October 2009. He enjoyed a very long remission from there. We were able to do all our local maintenance therapy and monitoring with a local hospital and occasional trips back to UAMS for tests.
As often happens with myeloma, he eventually started to relapse and we were back in the thick of it again trying to get him into a stable remission. We were able to do this on and off, but all were very short and he was quickly running out of options. By this time we were almost 14 years on this journey when the Janssen ABECMA CAR-T therapy had been approved and our doctor at UAMS was one of the ones who was to be delivering it. He put Dave on the approval request in April of 2022 and Dave received it November 1, 2022. His myeloma was undetectable within days of receiving his re-engineered T Cells.
Enduring the treatment is far easier than a SCT, but the recovery from the fludarabine/cytoxan pre chemo was very slow going. Getting his immune system into safer zones took months. He seemed to pick up every possible virus from shingles to omicron. He is much better now and his energy is returning, he feels amazing and the best part is he doesn’t have to take any chemotherapy to ensure the remission.
How did you experience this diagnosis, as his wife? Do you feel that you were well supported by the medical staff?
I often attribute my positive, stoic attitude toward finding the right place for him and dealing with all the challenges to being a military brat. We don’t have a normal upbringing. We move a lot and have to make new friends quickly. We have unusual challenges in life for young kids that is just the norm, because all our friends are in the same boat living on a military base.
BRAT has evolved to mean "brave, resiliant, adventurous, tenacious". My parents always taught me that I wouldn’t know if I could handle something until I was staring it in the face, that I would surprise myself what I was capable of. So through this challenge and others I’ve had in my life, I really try to deal with what is actually going on and stay away from all the "what if’s" of the future.
The medical staff at UAMS is stellar. Because most of the treatment is done as an outpatient, I had to learn how to do many things to care for him in our temporary home. They had complete confidence in me to do it and trained me how and what to look for. When to call their 24 hour emergency number and so on. They often asked how I was doing.
How does the disease affect your everyday life? Which symptoms are the most difficult to manage on a daily basis?
Believe it or not, except for when we are in the thick of it, with his major treatments, it doesn’t effect us much. We both decided early on that we would not worry about the future. We would take things as they came and do our level best to not let it define us. We travel, we see our children, and we do fun things with our friends. We have learned how to incorporate basic medical precautions to protect Dave from viruses and fungal diseases.
I couldn’t go back to work as I had planned when we moved to California, because the future was very unknown and I didn’t know when I might have to drop everything to take care of his needs. He is the breadwinner, so my job became to support him in that effort. We do things he feels like, and if he doesn’t feel like it, we don’t. Having confidence in our medical/research team at UAMS makes it easy for us to do his follow-ups, get a good report and get about living our lives.
My friends learned that I couldn’t always commit to doing something with them, but we would make it if he was feeling well and doing well. I always told them, “keep asking”. I found that my friends wanted to include me, but they didn’t want to stress me further by asking. So it was important for me to let them know to please keep including me and please keep asking.
Cancer patients can often experience a social death which can become very lonely. So if you have friends or family going through it, let them know that it’s OK if they come late, leave early, or have to cancel. It really takes the pressure off, but allows them the opportunity to get out of the house and live a little!
Shortly after his diagnosis, you decided to launch your blog "Riding The Wave – Multiple Myeloma". Why did you make this choice? What messages do you want to convey to your readers?
Starting a public blog about our journey was initially extremely stressful. After spending 18 months or so, writing a private blog at Caring Bridge to keep all our family and friends more easily updated, I found that I had a lot more to say. When I was writing at the Caring Bridge, it was very censored. Dave didn’t want me to put too much of his struggles out there for his parents to read. I honored that.
After we finished everything and he was in remission, I found that I had learned a lot and had much I wanted to say about how I dealt with his disease and my own feelings and struggles as a caregiver. It was scary, I didn’t know how it would be received. I didn’t know if anyone would be interested. Very quickly it was the patient bloggers who encouraged me and shared my blog, Riding The Wave – Multiple Myeloma, broadly on their blogs. Pat Killingsworth, who has sinced passed away, stated, “FINALLY! A CAREGIVER!”. I learned that many of the patients with myeloma worried a lot about their caregivers.
I also know from my own personal experience and theirs, that patients and caregivers often keep some of their deepest worries to themselves to not burden one another. So my blog was initially a place for them to read about what may be going on with their caregiver. And it was a place for caregivers to find solidarity and information in their journey. They weren’t alone.
My niche, if you will, became some science as well as everyday tips and ways to cope and deal with our emotions and challenges. To present a positive perspective with some humor. When you can’t change something, you can change your point of view about it. It has been a wonderful endeavour and quickly brought new and wonderful things into my life. I found many friends in the myeloma community that I cherish. We share a bond in the world of “Myelomaville”.
The little unknown fact about my blog, was I didn’t tell my husband for about three or four years. Not until I was getting a lot of attention and asked to participate in some groups, conferences, and go out and speak did I have to tell him. He was curious about why I was getting all these opportunities ? After his initial shock, he has become quite proud.
Anyway, it was very cathartic for me to write about topics and engage with others. I write about myeloma, but I also write about our life.
What topics do you cover? What feedback do you get from your readers? What does it mean to you on a daily basis?
I cover science past, present, and future. I post links to webcasts and conferences. I write about how to handle your family, friends, children who don’t understand what it is to have cancer. I write about ways to handle side effects, about our challenges and our victories. Major milestones in his cancer and our life. I hope that people find ways to LIVE with myeloma, or any health challenge to the best of their ability. To find joy and happiness in spite of it. I also provide other blogs, groups, research facilities, where they can gain more information in making the decisions they need to make. Each blogger and group has their own focus. I don’t cover all the things they need, but I hope to bring calm and give them some bread crumbs as they make their own way.
I remember one caregiver wrote to me after I posted Dave had played golf for the first time since his diagnosis. She wrote to tell me that their doctor told her husband, who was an avid golfer, that he would never play again, so he didn’t. After she read my blog post, he dragged his golf clubs out and went golfing!
What are your plans for the future?
We are just getting back to feeling like our life is getting to yet a new normal. Dave is feeling well, and his recent femur break (Fall of 2022 just before the CAR-T) has healed and he no longer has any physical restrictions. So while this year has been harrowing, we are feeling pretty good and I have a trip planned to reunite with my college roommates this fall in Bethany, Delaware. I’ll visit with my daughter and her husband as well as some friends. We have a couple small excursions planned.
I’m also planning to turn my blog into a book. I’ve been asked many times over the years, but it felt overwhelming. Somehow in this last treatment miracle I felt that it was time.
Finally, what advice would you give to Carenity members who, like you, have a loved one affected or are affected by multiple myeloma themselves?
Well, my by-line is a quote I came to love, "Life isn’t waiting for the storm to pass. It’s learning to dance in the rain". Another quote I heard recently was to not wait until life’s difficulties are gone to find happiness.
Don’t worry about the what if’s, just deal with what’s in front of you. Certainly take care of the things you need to take care of, but stay focused, and stay positive to the best of your ability. Reach out to others who have been there, the online community is robust. And if you aren’t online, ask your younger people in the family to help you with that.
There is a tremendous amount of help and resources for myeloma. It’s amazing really what an active grass roots community we have for an orphan disease with no cure. In the beginning it just knocks you off your feet! But get back up and start looking into what treatment course is right for you, and where. Don’t be afraid to travel for care. I found being away from home was easier for me to just focus on Dave.
Being home means I have to take care of too much else, which brings up an important point: Learn to ask for help! My neighbors and friends take care of our home while we are gone, I couldn’t do this without them. And if you remember, I had just moved. So I laugh now about my introduction to all my new neighbors: “Hi ! I’m Lori. I just moved here from Maryland and my husband was diagnosed with cancer. I have to go to Arkansas for his treatment. Can you mow my lawn, collect our mail, watch the house ?” And you know what ? They all jumped in fully invested in helping their new neighbors.
I often tell people who struggle with asking, “if you don’t ask for the help you need, you will get the help you don’t need”. We all like to help. It’s much harder to ask for it or receive it.
Any last words?
On our first consultation, the doctor told Dave he had 1-3 years to live. At the time I found it was more like 3-5 years. Now myeloma patients are living 7-10 years, and I’m blessed to know several in excess of 20 years, this all in the span of our 14 year journey. They are now looking at managing it and maintaining a good quality of life. So, breathe, take a moment, start researching on your own and find a myeloma specialist at the very least, a researching phyiscian is the best. They are on the cutting edge and do nothing but research myeloma and see only myeloma patients. They’ve seen someone just like you before, their experience will be invaluable to you. And often in places where they do research you will meet other myeloma caregivers and patients there for their follow ups or treatment.
Don’t be afraid to take your time and get more than one consultation about your disease. Whoever diagnosed you will get you started to stabilize everything, use that time to find other possibilities. You will learn a lot about the many choices you have and the one that fits your goals. There are many things to consider: Whether you can travel far away, your insurance coverage, your age and other health isssues, as well as your personal choices.
There isn’t a one size fits all approach to this disease. Finding a healthcare team that you have confidence in is very important in this journey.
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