Kimberly Alexander, CEO of Degree Well being Company, displays on caring for her husband, former NFL linebacker Elijah Alexander, after his a number of myeloma analysis. She shares how his expertise — together with signs being ignored — impressed her to advocate for consciousness and higher assist within the Black group.
In an interview with CURE, Alexander encourages care companions to prioritize their very own well-being, ask for assist and join with sources like That’s My Phrase MM so nobody has to navigate myeloma alone.
CURE: Are you able to share how your expertise as a care companion for Elijah formed your perspective on a number of myeloma and impressed your advocacy work inside this group?
Alexander: My expertise with a number of myeloma has now spanned 20 years. I first discovered about it when Elijah was identified. Neither of us had ever heard of myeloma, so we had been fully caught off guard and attempting to study every part in actual time. I keep in mind pondering, “It’s most cancers — they’ll take away it or deal with it, and he’ll get higher.” However then we discovered it was a blood most cancers, and again in 2005, the data on the market was horrifying.
I used to be heartbroken and overwhelmed, attempting to grasp a illness I knew nothing about and feeling like there weren’t many sources to assist us. That have is a giant a part of why I stay so dedicated to this work. I wish to assist others who may discover themselves in the identical place we had been all these years in the past.
A lot has modified since then, and it has been unbelievable to see. Working with That’s My Phrase MM and collaborating in conversations just like the current Black Well being occasion in Atlanta means a lot to me. Seeing sufferers and caregivers within the room, studying, connecting and sharing their tales — these conversations merely weren’t occurring when Elijah was identified. Being a part of that right now and realizing it could actually make a distinction is extremely significant.
What had been a few of the greatest challenges you confronted as a caregiver, each emotionally and bodily, and the way did you navigate them?
Feeling like I didn’t have a lot assist. I used to be extremely younger. I grew to become Elijah’s caregiver at 32, and I didn’t even acknowledge that phrase for myself. I noticed it as, “I’m his spouse. He’s sick. That is what I’ve to do.” I used to be caring for him and attempting to maintain our family operating with two younger sons, and that was overwhelming. Many individuals didn’t perceive a number of myeloma or what we had been going by means of. On prime of that, the youngsters had been in elementary faculty bringing residence germs, and myeloma usually compromises the immune system, so a easy chilly may actually knock Elijah down. I used to be continuously attempting to maintain every part protected whereas balancing parenting and caregiving.
Understanding grew to become one in all my escapes — a second of solitude that helped refill my cup. I all the time inform folks you may’t pour from an empty cup. Once you’re caring for a affected person, a family and your self, you must discover some approach to maintain that stability.
What I respect now could be how advances in expertise assist folks construct group. That’s what That’s My Phrase MM is about: connecting and studying from others who perceive this area. Again then, I didn’t have that assist. Folks didn’t totally perceive myeloma, in order that they didn’t understand I wanted assist — and I didn’t know the best way to ask for it. That’s why I all the time encourage care companions to not really feel responsible about asking for assist or taking time for themselves. Just a little little bit of self-care is critical for those who’re going to maintain caring for another person.
What boundaries to care or systemic points have you ever seen throughout the board that disproportionately have an effect on Black sufferers, and what adjustments do you hope to see by means of your advocacy work?
It begins with their signs not being taken critically. That’s one thing I’ve heard many times in conversations with individuals who have myeloma — and it was true for Elijah, too.
Elijah had performed skilled soccer for years and was identified with myeloma a few years after he retired. He nonetheless appeared like a linebacker, so when he complained about ache in his toes, folks brushed it off. They’d say, “After all your toes harm — you performed soccer.” However nobody did any blood work. It really took a physician out of the country to lastly order assessments, which is unbelievable to me.
I’ve since heard the identical story from different myeloma sufferers: they go to the physician, share their signs, and people signs are ignored. That’s why it’s so necessary to have conversations just like the one we had in Atlanta with Black Well being — areas the place we will discuss concerning the signs of myeloma, share tales and ensure our group is conscious. As a result of myeloma impacts us greater than anybody, we’ve got to know what to search for and really feel empowered to talk up.
In case you really feel ignored or dismissed, it’s OK to face your floor and ask for extra consideration. It’s OK to get a second opinion. It’s OK to search out one other physician who listens. And ensure to attach with sources like That’s My Phrase MM — there’s a lot precious data there to assist information and assist you.
Are there any signs or indicators that Elijah had that you simply needed to emphasise for sufferers to perhaps be careful for?
It’s fascinating to assume again on Elijah’s signs. I typically marvel if he had greater than he shared, as a result of after years {of professional} soccer, he was conditioned to push by means of ache. By the point signs grew to become noticeable, his illness was already extra superior.
The principle symptom he talked about early on was ache in his toes. Many individuals with myeloma expertise again or bone ache, however for Elijah, his analysis got here when issues had been already severe. He even had bubbles in his urine — his physique’s method of attempting to eliminate extra protein brought on by the myeloma. It’s not a pleasing symptom to speak about, however I feel it’s necessary to share. If somebody sees that, even whereas dismissing different indicators, it could be the factor that pushes them to get checked.
That’s why staying related to organizations like Black Well being and campaigns by means of That’s My Phrase MM is so necessary. They assist folks study what signs to look out for and join with others going by means of comparable experiences.
What recommendation or steerage would you give to different care companions and households navigating myeloma, and the way can they greatest assist their family members whereas additionally caring for themselves?
One factor I all the time inform households and care companions is to acknowledge that individuals with myeloma don’t all the time look sick, and that may be actually irritating. After they’re not feeling nicely, they could simply keep residence, so others don’t see the wrestle. Due to that, what myeloma sufferers undergo — how onerous it’s to stay with this illness and nonetheless attempt to maintain going — may be dismissed. If you recognize somebody is coping with myeloma, supply assist nonetheless you may, no matter how they appear on the surface.
For care companions, I all the time stress doing no matter helps you in supporting your beloved. At physician appointments, file the dialog or take detailed notes so you may assessment it later. If one thing isn’t clear, ask extra questions, look into sources and join with different myeloma households.
Once I was caring for Elijah, there weren’t as many sources as there at the moment are. That’s why I’m so dedicated to creating certain folks get related — whether or not it’s a assist group, an advocacy group, or instruments like That’s My Phrase MM.
Is there something that you simply wish to add?
One factor I all the time need care companions to listen to is: Don’t really feel responsible for those who want a break. Trying again, probably the greatest issues I did — regardless that I didn’t totally understand it on the time — was creating areas the place folks didn’t know I had a beloved one at residence with most cancers. It gave me an opportunity to step away, even only for 20 or half-hour, and really feel regular for a second.
Transcript has been edited for readability and conciseness.
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