Myeloma, Party Of Two: The Myeloma Door
It’s late, and I’m working on my column. My husband, Daniel, has just retired to bed, so I step away to perform my ritual “security sweep.”
I check the locks and the deadbolts on the doors. I turn on the security alarm, check the exterior flood lights, and turn off extraneous indoor lights. I think to myself, “How can he sleep like a rock behind an unlocked door? I can’t even type another word in my column, much less go to sleep!”
I’m hard-wired that way; I’ve always felt the need to protect myself and my family from the elements.
As I return to my column, I can’t help but think about the one intruder that is always on my radar. It’s not a masked criminal or a thief; it’s not an escaped convict or a drug dealer. It’s multiple myeloma. And the only way for me to live well with multiple myeloma is to lock it out and not think about it until I must.
Multiple myeloma is a persistent intruder. If I leave the door cracked open just a bit, it will break in. Slipping through the light space like a flowing ribbon of darkness weaving its way into my thoughts – into our world, and into our happiness. If I let it, multiple myeloma will rob me of my peace, and so I lock it out.
I do my best to keep the myeloma door locked all the time. This can be difficult, because Daniel doesn’t need to keep it locked the way I do. He feels more comfortable with it open sometimes. He reads articles and wants to discuss them. There will be new drugs results published that he brings up, or commentary on the efficacy of stem cell transplants.
When this happens, I want to support him and express interest. I usually offer positive comments about the strides made since we first saw his myeloma specialist in 2012. I listen and share, but behind my conversational tone and pleasant expression, I am standing at the myeloma door, vigilant, looking for the slightest sign of forced entry, ready to fight it back before it can fill my thoughts with doubt and fear.
It’s not easy to be open on the outside and protected on the inside. I live both outside and inside the myeloma door, because I won’t lock my husband in here with me. He wouldn’t be happy in my world without multiple myeloma. He needs to be able to come and go from this mental space. He doesn’t react to this disease the same way I do. He lives with it differently than I do. Just like he can sleep with the house unlocked or drive into a panhandler-filled intersection with his windows rolled down, he invites myeloma into his head space where he can rationalize it, understand it, and deal with it better.
My reaction to multiple myeloma is different. It’s an emotional one. I can’t make sense of it by thinking about it, even though I’ve tried. I used to read all the articles and I tried to cope with it the way that Daniel does, but doing so just left the myeloma door too open for me.
Myeloma didn’t respect the boundaries I needed it to. Myeloma weaved its way into my thoughts such that I was no longer thinking about the clinical trial drug, for example, but rather how long those people had to live before the drug stopped working and they died. While I was happy to have another tool in the tool belt to use against this disease, my enthusiasm was tempered by the reality that it wasn’t a cure, and we don’t know how long it will be till there is one. This inevitably leads to the worry: Will they find a cure in time for Daniel?
So I needed to find a way to keep the myeloma door locked, but be in two places at once. Be outside the door when my husband wants to talk about it, or we have to go to the cancer center, for example, but not leave the door open so that it can come into the most sacred of spaces – my heart – where it can do the most damage.
When I’m on the other side of the myeloma door, I just try to keep “my thoughts,” my reactions, and any focus on me out of the equation. I do this because, if I open that door, if I let it in and make it about me or my feelings or my needs, then I know it will be that much tougher to close the door again, and it’s too tough to live with myeloma otherwise.
Other caretakers live with multiple myeloma differently. Some people invite myeloma in for tea, for others myeloma is a roommate, and for others it has been the unpardonable thief. Ultimately, we all have to find a way to cope. In the end, I know my role. As a caregiver, I’m not in the bed; I’m beside it. I’m not taking the therapy; I’m loving someone through it. This is not about me, though I am impacted by it.
I can’t keep multiple myeloma out forever. One day I will open this door. Hopefully, I will open it to the light of a cure, where myeloma is no longer the intruder. But even if it isn’t, I will have the strength to open it because love is stronger than myeloma, and that’s something that we have in spades.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Dear Tabitha, I appreciated your words and could identify with them. Like you I would prefer to keep the myeloma door shut as much as possible, but I do find that it creeps open without my permission. Best wishes to you and Daniel.
Tabitha, I enjoyed reading this column and learning how you manage to avoid the stress of being a wonderful caregiver! Indeed, I am sure that one's imagination can go into a frightening place if one lets it. I am not very friendly with the myeloma beast either and would like to lock it out if at all possible. I guess we set up a security system around the perimeters of the disease with routine check ups to try to nip any problems in the bud before they can take over in our system. Best wishes, and hope that you and Daniel are enjoying summer!
Great column, Tabitha. I don't know if it is the different roles of patient and caregiver, but I think this may accurately describe the different way my wife and I deal with myeloma. Hearing your perspective helps me understand her a bit better. I think she needs to keep the door closed too. It can be mistaken for a form of denial, but that isn't true at all.
An amazing column of wisdom, Tabitha!
Thank you all for your kind comments.
Marjorie and Nancy, you both seem to handle the "Myeloma Door" so well. Your columns speak to us all with voices of hope, perseverance, and positivity. Thank you for your examples!
Mark, it's so nice to hear that this column may help myeloma patients empathize with their caregiver's experience. I've heard that from a couple people so far, and it makes me happy to think that my column was helpful in this way. Myeloma impacts caregivers and patients differently, but impacts each deeply...anything we can do to support one another through it and increase our ability to live well with myeloma is the goal!
Best wishes to you all!
Tabitha, what a wonderful column. My husband was diagnosed with multiple myeloma in March, we are now preparing for a stem cell transplant.
I used to apologize and correct myself when I said "we", but man oh mister, my husband and I are in this together! We are faced with the same problem, but our paths are different. Like you and your husband, we face it with different approaches. It is my husband's nature to keep the "Myeloma Door" pretty firmly shut. He deals with the day-to-day side effects of the treatment protocol, but I bet he has not done a single online search on multiple myeloma to this day.
My style is 180 degrees different. I read, I studied, I researched, and I got organized. I had a master calendar, a list of medical staff and support staff we were working with, a notebook and a binder all ready to go. Yellow highlighter in hand and labeled tabs on each section, I was ready to turn in the assignment for my A. Then it hit me. I could do A work, but their was no one to turn this project in to. I was not going to be moving on to my next assignment. This is it. Multiple myeloma is our challenge.
"We" have the same topic, just different roles. My hope is strengthened by your words.
Tabitha,
"As a caregiver, I’m not in the bed; I’m beside it. I’m not taking the therapy; I’m loving someone through it. This is not about me, though I am impacted by it."
You hit the nail on the head for caregivers with this insight. Early in my husband's journey 2006, a wise social worker made clear to our group of caregivers that no matter how much we love our partners, we have to remember this disease has diverged our paths in a profound way. We are talking mortality.
Offer yourself the compassion and empathy we freely give the patient. Sometimes just be still. It's hard though. Thank you for sharing.
Sharon, Michelle, and Kate, thank you so much for sharing your thoughts! It's funny to me how my perspective has changed a caregiver throughout the process. In the past, like Michelle, I've felt the need to research, research, and research - I think that doing this helped me feel like I was in control. Now, however, after several years of this journey, I find myself allowing myself the space I need to retreat from the myeloma world when I need to. To Kate's good point, I'm trying to offer both myself and my husband the compassion that we need, and a lot of that is knowing when to be still and listen.
Your insights are all so helpful - thank you for sharing them!
Hello Tabitha, Wow, what a powerful article about your relationship to multiple myeloma as a caregiver. My love, my husband, my caregiver handles this journey totally different than me. I read him this article and it stimulated meaningful conversation. Your words also encourage me to continue asking him how he is managing right now. I know he worries and doesn't tell me until I ask. Your article gave me new vocabulary to use between my husband and me. Thank you
My husband read this and sent it too me.
This is so me. It took me awhile to read it because of the tears. I have beat colon cancer and breast cancer and now my husband has multiple myeloma. When I go with him for his treatment infusions, it brings back my time in the chair to the point I can taste the chemo. I talk with him about his journey, but it's so hard because I feared my own death for so long, and now I fear losing him and being here without him. I open the door when he needs to, but I close it shut and slide down behind it in tears after.
My prayers are for you as you take this journey.
Maureen and Angie, thanks so much for your comments.
Maureen, how nice to know that this column inspired such good dialogue between you and your husband! It's funny how those that we are closest to can experience the same event and see it differently than we do. You're so wise to touch base and check in with one another along the way. Hope that it helps you both as you walk this difficult journey together!
Angie, I can't thank you enough for sharing what you and your husband are going through. You've both had so much to deal with over the years. So few of us are in the unenviable position of being both caretaker and cancer patient. If there's a bright side, surely it's that you have an even clearer understanding of what the other person feels. I hope that you will find strength in one another in the days ahead, and most especially in the coping mechanisms that bring you comfort. You both know all too well how important it is as caregivers to be strong for one another and also find the release you need as individuals to deal with the stress and strain in mentally/emotionally healthy ways. Keep your chin up, and relish the good days as they present themselves. Thank you for your prayers, and know that you'll be in mine as well.
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